Cure PMD

From Holland Bloorview's website:

2011-10-31T19:10:00.000-07:00

Holland Bloorview Kids Rehabilitation Hospital Foundation

The Unlimited Jacob

"Jacob now has a voice thanks to Dr. Tom Chau and the amazing team of researchers who work with him.” – Marcy, Jacob’s mom

If you want Jacob to bust into giggles, tell him a joke that involves, um… flatulence. Or just sit on a whoopee cushion. That should do the trick. You may want to. His giggle is infectious.

Goofy antics take a back seat when he’s in Holland Bloorview’s pool, however. With the freedom to move and appropriate support for his neck, Jacob now swims more than 100 meters.

"He is happiest in the water when he can move independently,” says his mom Marcy.

Jacob, who is nine years old, has Pelizaeus-Merzbacher Disease (PMD), a rare disorder caused by faulty myelin. Myelin is a fatty covering that insulates nerve fibres in the brain. As a result, Jacob’s vocal cords are paralyzed. Although he can make sounds, he is unable to protect his airway from food or drink. PMD also inhibits his movements. As a result he is unable to walk or clap his hands. But he finds ways to adapt so he can enjoy favourite pastimes like strumming and plucking the guitar.

Jacob is a very bright boy. “The worst thing is when people underestimate him,” says Marcy.

Both she and her husband, Andrew, have worked tirelessly to find a drug that would improve neurological function in those who have PMD. At this point there are no known treatments for this rare disorder.

While Marcy and Andrew are actively pursuing a treatment for Jacob, they also want him to be able to effectively communicate his needs and wants. For most of Jacob’s young life, his means of communication was limited to nodding his head or opening his mouth for ‘yes’ and making a sound for ‘no’. Often he would scream in frustration during his mom’s stream of questions to ascertain what he wanted. When his younger twin sisters, Sierra and Jamie, were learning to speak, Marcy made an important discovery.

"I noticed how their statements would jump around,” she says. “That got me thinking. If Jacob’s mind worked the same way theirs did, it was no wonder he got so frustrated with me. The yes/no questions were too limiting – he could only tell me what he wanted if I asked the right question.”

Marcy first learned of Dr. Tom Chau’s work on adaptive communications technology when she read an article about him in the Globe and Mail. The best news was that Dr. Chau, a renowned biomedical engineer, was located at Bloorview Research Institute in Holland Bloorview, the very place where Jacob enjoys swimming and the Snoezelen room, and accesses services like orthopedics.

After receiving Marcy’s request to work with Jacob to find communications solutions catered to his needs, Dr. Chau was quick to accept.

Dr. Chau began with a throat switch that enabled Jacob to choose items on a computer that best expressed what he wanted to say. Jacob, who triggered the switch by making a sound, grasped the concept of the switch immediately. The throat switch, however, was not always reliable.

When Dr. Chau adapted an Ipod and placed the switch, which is connected to the Ipod, just to the left of his head, suddenly Jacob could easily specify his needs and wants with the touch of his cheek. The first thing he asked for was a big hug.

Without waiting for mom and dad to ask the right question, Jacob can now tell others that he wants his favourite cat Spot, to talk to someone, go for a walk, go swimming, play the guitar, and accompany his mom on coffee trips. He has 30 programmed statements from which to choose.

Jacob uses his adaptive Ipod all the time in class at Sunny View Public School. It is helping him advance academically. Jacob was a key player in introducing this adaptive technology to Sunny View, a school for children with special needs, which is now home to Dr. Chau’s Satellite Infinity Communications Access Lab. The purpose of the lab is to find customizable communications solutions for kids who also cannot speak and have limited mobility.

Having observed Dr. Chau and his team work with Jacob, Marcy knows that Jacob’s classmates are in very good hands.

"It’s not just a bunch of scientists designing machines,” says Marcy. "They have to know the kids and more than that they have to be comfortable with them. Dr. Chau and his team will talk to Jacob before they talk to me which is the way it should be. They are very respectful of the kids.”

When asked what opportunities she envisions for Jacob, Marcy isn’t too sure – the possibilities are unlimited.

"They have such wonderfully creative things tailored to individual needs that I am constantly wondering what amazing things they will think of next,” she says. “It’s way beyond what I’d thought they’d be able to do.”

Jacob's classmates at Elkhorn

2011-10-28T13:34:00.000-07:00

Jacob's new friends

2011-10-28T06:47:00.002-07:00

It started as a trial last spring - Jacob started spending a 1/2 day a week at another school, a school that didn't have other kids in wheelchairs or feeding tubes. Elkhorn is a regular public school filled with kids who can run, speak and follow the standard Ontario curriculum. The idea was to continue to expose Jacob to 'regular' kids because he loves having kids speak to him and interact with him. And I knew he could follow along with their class work. I knew this because if he couldn't, we would know - he wouldn't sit still, he would fidget in his chair and he would scream in protest. And his teacher was known to him - she had been his teacher the previous year at Sunnyview. She 'gets' him and knows exactly how to teach my son. Cheryl knew it would work, I hoped it would.

From the day Jake was wheeled into Elkhorn he was accepted beyond anyone's expectations. The kids gravitated to him, they were curious and friendly and the teachers were won over by Jacob's huge, toothy smile. The trial was deemed an unequivocal success and Jacob is now a weekly presence at Elkhorn. He has even started learning French alongside his new friends!

Jacob's first few weeks of camp

2011-07-15T10:45:00.000-07:00

Jacob is having a great time at camp. For the month of July, he is at a day camp near our house and is bussed there and back each day. He spends his time engaged in an assortment of activities including music, sensory stimulation, swimming, cooking and painting. Jacob is smiling his huge grin in each photo I've seen and tells me he is having a good time every time I ask.

When he comes home from camp, he has been spending time in his stander and/or walker. Watching him zoom around the house in his walker is amazing, and we have to be pretty quick to keep him from purposely bumping into the walls or anything else that is in his way! Seeing him upright in the stander is also an incredible sight - it's wonderful to see how tall he is getting, something that isn't always so obvious when he is in his chair.

Watching him swim is still the most awesome (one of J's favorite words!) sight - with a special neck ring, he is able to swim independently and can do laps in a 23m long pool. He propels himself with his kicks and uses his arms in a dog-paddle. It's simply astonishing to witness. When I figure out how to upload a video from my phone to this blog, I will post it.

Please call me Charlie

2011-05-25T20:20:00.001-07:00

A few months ago, Jacob's class started reading Charlie and the Chocolate Factory. When his teacher, Vanessa (with him in the picture), reported that Jake was really enjoying the story, I bought him a copy of the book. Whenever he and I went for coffee, I'd bring the book along and we'd spend the time reading. He LOVED the story. At one point, I must have called him Charlie and he laughed. So I did it again and again. And he kept laughing. Finally I gave him a choice and asked if he wanted to change his name to Charlie. My son gave me an unequivocal YES! So he is now referred to as "Charlie" and sometimes by his full name "Charlie Buckett".

How ironic is it that Jacob (I mean Charlie), who doesn't tolerate any food in his mouth, prefers to be referred to by the name of a fictional character whose favorite thing in the world is chocolate?

Some of you might remember that a few years ago he wanted to change his name to Wanda. I guess Charlie is a move in the right direction...

Jacob is 9 years old!

2011-05-17T17:14:00.000-07:00

The festivities started with a party at school on Friday - Sierra, Jamie, Andrew and I came to Charlie's (aka Jacob, his new preferred name is a story on its own) classroom for the first of his birthday celebrations. He stood in his stander for the entire party and loved blowing out his candles with a fan that was rigged to his jellybean switch.

The next party was the school party, at home on Sunday. We had 2 of Charlie's classmates, 1 of his teachers, his PT, nurse (and her grandson), Bubbie O (again, another story) and the vice principal. And he had a blast! We had some games set up and the prize for the winners was that they got to have their pictures taken with the birthday boy.

Less than an hour after this party ended, the family party with his cousins began. By the time it was over, all three kids were zonked. But it was so worth it! Charlie had so much fun, he had a great big grin the whole day.

The only thing missing from the parties were his princesses, most of whom were out of town. But the special phone calls were a treat!

The Reluctant Expert - Posted on BLOOM

2011-03-06T13:34:00.000-08:00

Friday, March 4, 2011

Welcome to the club

Welcome to the club
By Marcy White

I belong to a receptive and supportive club which I joined unknowingly. At various times, our members are experts and novices, advisers and information seekers. My alleged area of expertise has nothing to do with my university education or employment history, and everything to do with raising my son, Jacob (above centre).

I am a reluctant expert on gastrostomy feeding tubes, also known as g-tubes, and all their accoutrements. G-tubes are surgically implanted holes in people's abdomens where tubes are inserted so that liquid nutrition and medication can be fed directly into the patients' stomachs, bypassing their mouths. I'm not proud of being so well informed about this particular topic but I amassed this information because I had no choice. My son, Jacob, has had a g-tube since shortly after his birth, almost nine years ago.

Recently, I found myself speaking with a scared and overwhelmed mom whose child was abruptly shoved into the world of 'alternative' feeding. During our conversation I remembered the feeling of relief I experienced the first time I was introduced to a member of what I have termed the Parents of Children with Medical Issues Club (PCMIC). And I recalled how comforted I felt to know I wasn’t alone. If I was able to provide some insight and information to this mom whose world was only recently turned upside down, I welcomed the opportunity.

When Jacob was born, he had difficulty breathing. At just a few minutes old, he was placed on a ventilator and started down a very long road of medical battles for his life.

When I went into the neonatal intensive care unit to feed him on his second morning, I was surprised to see my tiny son with yet another tube running out of his little body. This one was a two foot long naso-gastric (NG) tube coming out of his nose, taped in place to his soft cheek with a white bandage that covered almost the entire right side of his face. The nurse, noticing my appalled reaction, explained that this tube would function to deliver my pumped breast milk directly into his stomach because he couldn't swallow without choking. In shock from the unexpected complications following Jacob's birth, I watched as the milk slid into his body, drip by drip.

When Jacob was six weeks old and still in the hospital, the doctors approached us about having a hole surgically cut into his stomach so that a tube could directly administer his nutrition, a more permanent solution than the NG tube.

When I saw Jacob post-surgery I barely recognized my little guy. Since his second day of life, he had a giant white gauze-like bandage covering half his face. Walking over to his crib, I saw an adorable little baby with a full head of dark brown hair and pudgy cheeks. Two of them. Seeing all of him was the first positive thing about this surgery. I could kiss both sides of his face and feel his warm cheeks.

I learned how to care for my son. I received intense, on-the-job medical training from the nurses during Jake's three-month hospital stay. My education was from trained professionals. But I felt isolated – I didn't know anyone who had a child like mine, one who struggled each day to breathe, to move, to grow. I was alone.

Three years later, Jacob's medical issues had stabilized and taking care of his needs had long become routine. Through mutual friends, I was given a phone number of a parent with a child a few years older than Jacob who had similar medical challenges. With the hope of gaining some insight from a more experienced parent, I called Jeff.

One evening a few days later, Jeff and I were sitting in my kitchen discussing our common experiences and struggles as my husband, Andrew, mixed Jake's meals for the following 24 hours – six containers of infant formula, each one with a different ratio of powdered formula to sterile water. When Jeff noticed how time consuming and labor-intensive Jacob's meal-preparation was, he explained what his son ate and how much easier the process could be. Jeff shared pertinent information with us that nobody else had. The medical professionals didn't hold back these details on purpose, they just didn't know them.

I've learned that the best source of information is other parents who are in similar situations. My initial contact with Jeff didn't happen until Jacob was three years old and we had been struggling on our own for his entire life. I now know how helpful it is to seek out parents who have been through what I'm experiencing. The hardest part is finding the first person. After that, it gets easier. The PCMIC is a group that anyone with a child with challenges can join and benefit from the extensive and assorted experiences of others who are willing to share.

When I was given the opportunity to be the first experienced parent to speak to the mom new to my world, I welcomed the chance. I wanted to be able to do for her what Jeff did for me. I wanted to show her how supportive our club is.

Summary of a discussion about technology being used to help children communicate

2010-11-23T11:51:00.000-08:00

The following was posted on BLOOM, Holland Bloorview Kids Rehabilitation Hospital's blog. It was written by Louise Kinross, the editor of BLOOM.

Thursday, November 18, 2010

Technology: Hype or hope?

I listened to a fascinating parent panel hosted at the Bloorview Research Symposium Tuesday. It was called Assistive Technology at the Dawn of the 21st Century: Juxtaposition of Hype, Reality and Hope. It was noted that 25,000 children in Ontario lack technology that would allow them to communicate or access a computer.

Holland Bloorview biomedical engineer Tom Chau (above left) moderated a discussion between four parents whose children have tried various communication technologies. The session was facilitated by students and staff in Tom’s Prism Lab. A focus of Tom’s lab is called ‘body talk’ research. This involves developing systems to detect physiologic signals – changes in brain waves, breathing patterns or heart rate – and translate them into electronic communication for kids who are non-verbal and immobile.

I wanted to share some of the parent comments with you.

What do you think about the hype around technology?

Karen Castelane: When I think about hype I think of the positives. It grabs the attention of the general public, stops them in their tracks and makes them take note. It motivates scientists to work in this field, and donors to donate, and gives hope to parents and therapists. It shows that this population has value and endorses the notion that communication is a right for all. When I think of negatives, hype can backfire when we don’t have quick results and the technology doesn’t live up to expectations.

Donna Cappelli: When my son Julian was younger people would say: “Isn’t there all this great technology? In five years you’ll hook up something to his brain and he can do anything.” But part of me has to accept how Julian is. If things don’t happen quickly, Julian gets frustrated. As parents, we have to take pause. I used to want to jump on everything but now I want to assess it.

How realistic is media coverage about assistive technology?

Donna Cappelli: I think media coverage is important. Everything comes down to money. Some of these technologies are being marketed for gaming because gaming makes money. If the media can show that the technology can be used in these other ways, it’s good.

Christopher Hopper: It’s helping you (scientists) stay motivated and engaged and pushing each other, whether it’s coverage in the popular press or scientific journals…Early on I thought maybe this technology will solve my son’s problems. Over time I learned that maybe there isn’t anything to solve. There aren’t any silver bullets out there, no magic wands. But there are different things that we can bring to bear. Through a tablet computer with a communication software, our son has gone from a rudimentary ability to communicate in sign to saying “I want juice or water” to…surfing on his iPad on YouTube.

Karen Castelane: My son Max is a normal boy trapped within a body. There is no existing technology to facilitate his communication. He can’t reliably and consistently get his body to move to hit a switch. He has basic yes and no responses. He can’t make his thoughts and needs and wants known. People who work with him need to have absolute patience. I think a learned helplessness sets in because we have to interpret for him. When we heard there was technology here that didn’t rely on physical movement…that hope bulb went off and we were totally committed. But four to five years in, we aren’t any further ahead than when we started. It’s frustrating. Our expectations are diminishing that Max will have access in his lifetime.

Donna Cappelli: Julian is able to communicate verbally, but his teachers and others who don’t know him can’t understand him. We had high expectations for technology but one of the difficulties we’ve had is to find something consistent for Julian. And on the other hand, when we do find something, Julian may reject it even though it’s appropriate. For example, he has single-switch access through a throat sensor that allows him to turn the pages of an online book. But the books from the library that he wants to read aren’t available online. So he has the access but nothing to use it with. So everything else has to catch up with this technology.

What are your dreams for your child?

Marcy White: To find out what Jacob’s dreams are. He’s trying to tell us something. If I had to choose one thing – he doesn’t walk and can’t hold his head up and is tube-fed. But if had to choose one thing, I’d say it would be to be able to communicate. We recently began using an iPod and I’m able to see in a very short period of time very appropriate use by him. I want to find a way to open him up because I know he has a lot to say.

Christopher Hopper: My dream is that he will grow up to be happy and fulfilled. Through assistive technology, Ben’s life has changed from black to white. I have the same dream for all children who are locked in a box. Being able to express choice, preference, love – it’s universal and it is a right.

Photo by William Suarez

Published in Bloom Blog (from Holland Bloorview Rehab Children's Hospital)

2010-11-03T17:12:00.000-07:00

Wednesday, November 3, 2010

A dentist with a different approach

A dentist with a different approach
By Marcy White (above with Jacob)

I took my eight-year-old son to the dentist. His appointment was the last one of the day, at 3:30. From the moment I woke up, I felt a ball of dread bouncing around in my stomach.

Taking Jacob to any appointment is an ordeal. Physically, it is difficult for me to carry him into the car. There is a lot to remember to bring with us, including bibs, a change of clothing, diapers and – depending on the time of day – pre-measured medication loaded into syringes, his food and his feeding pump. Emotionally, medical appointments are challenging because Jacob hates being examined. He yells, his only way to protest, for the entire duration of the meeting.

As much as I tried to put the day’s consultation out of my mind, it kept popping back into my consciousness and I imagined the sound of Jacob's angry screams reverberating in my ears.

His school bus arrived home at the usual time, 3:10. I immediately placed him into his car seat and clumsily heaved his 100+-pound wheelchair into the back of my van. During the 15-minute car ride, I told him where we were headed and reminded him that he was a big boy and didn't need to be scared.

I explained to Jacob that the reason we were going to a new dentist is because this is the dentist his sisters go to. Sierra and Jamie really like him and we thought Jacob would like him too.

For a child who’s fed by a tube inserted directly into his stomach, one would think that dentist visits were not necessary. Ironically, that is not the case because the act of chewing cleans teeth, in much the same way as a toothbrush does. Because Jacob doesn’t chew, plaque accumulates in his mouth at a much faster rate and he needs a dental exam every four months.

Until that day, Jacob had always seen an experienced dentist, a professional who rarely spoke directly to him. My son’s typical behavioural pattern was to start screaming uncontrollably the second his wheels crossed the threshold of the exam room.

Jacob's screams are incessant. They leave him soaked in sweat – as if he has just emerged from a shower. He chokes during the appointment because he cannot swallow all the secretions that his yelling causes. In short, the dentist visit is torturous for all involved, but it's hellish for my son.

Sadly, most of the medical professionals we've encountered over the course of Jacob's eight years have had virtually no social interaction with him. I cringe each time the doctors ignore my son – the patient – and speak only to me. When I inform them that Jacob understands our conversation, they still don’t interact with him. They often begin their examination without asking Jacob’s permission to touch him or explaining what they will do. I didn’t expect today to be any different.

As we entered the small, non-air-conditioned office we were told that the dentist would see us shortly. I wheeled Jacob into the waiting room and banged into a chair along the way because the aisle was not wide enough for Jake's wheels to pass easily. I sat down next to my son and reminded him about what would happen during the appointment. A few times his mouth contorted into the saddest frown that made me want to cry, but Jacob was able to compose himself. He was trying to be brave.

The room was hot and stuffy and I worried that the temperature alone would upset him. A friendly hygienist came up to us, crouched down and told Jacob that it wouldn't be much longer until it was his turn. Jacob looked at her and listened while she spoke to him. I can’t remember the last time someone at a doctor’s appointment thought to bend down and speak directly to my son. The simple act of conversing with Jacob, at his eye level, was enough to make me notice that so far this appointment was different from most of the other ones we've been to.

A short while later, the dentist, a tall, lanky man with a big smile, walked into the room and promptly shook Jacob's hand and said: “Hi Jacob, my name is Ed.” Instead of breaking into an ear-piercing shriek at the sight of this stranger, Jacob lifted his head to look at the newcomer. He was curious and willing to let this person speak to him. Ed sat down on his stool and explained, to Jacob, what he wanted to do during the appointment. He then asked Jacob if it was okay with him. Treating my son like a person was all it took for Jacob to listen and not scream. When it came time for the actual exam, my son was calm and co-operative.

My heart was racing; I was amazed by Jacob’s behaviour. I couldn’t believe this was the same kid whose screams are legendary at the hospital where we attend most of our appointments. I was so proud of my son and felt like giving the dentist a huge hug. I tried explaining how dramatically different Jake behaved and how talking directly to him made such a difference. I don’t think Ed fully understood the magnitude of this event and how it altered things for us.

Later that night, when I replayed the afternoon in my head, I felt a heavy sadness in my chest. I realized that during all the previous appointments Jacob was probably screaming for someone to explain what they wanted from him. It was terribly distressing to me that it took eight years to find someone who was willing to look past Jacob’s physical impairments to see the person in the wheelchair. I imagined how different the past eight years would have been if the doctors who had ignored my son had treated the whole person he is – and not just a body part.

Since that momentous day, Jacob and I have changed. At the start of medical appointments, I tell the professional that Jacob does not like being examined and doctors scare him. But if they speak to him and explain what will happen, he might be more co-operative. So far, it’s worked. Appointments are still physically difficult, but they are not as terrible as they once were.

And if you need a dentist, I can give you the number of a great one.

Thank you staff of Camp Yaldei, July 2010

2010-08-30T20:18:00.000-07:00

This letter is written for everyone who was involved in Jacob's care at Camp Yaldei this summer. This includes his three counselors, two rotators, medical people, camp directors, the girls who formed a human chain to prevent our car from driving away and everyone else who helped him have such a super time:

When our van pulled up at camp on June 29, I saw a bunch of counselors gathered on the porch of the cabin. We stopped our car and I got out. I opened the side door and started unbuckling Jacob's car seat. At that moment, someone from the porch noticed who was in the car and yelled “Jacob's here”. The next thing I knew, there was a swarm of orange sweatshirts around Jacob and my son was yanked out of my arms by an excited staff member and whisked away.

Later, when his medications were unpacked and I finished reviewing his feeding and medical schedule with Mr. Friedman and the nurse, I went looking for my son. I found him lying on the trampoline with Sarah-Yitti. They were bouncing, singing and laughing together.

After we said goodbye, he went right back to his game and I heard his laughter as I walked away.

People have asked me if it was hard leaving Jacob at camp and they are surprised when I tell them “no, it was actually quite easy”.

Jacob clearly has medical issues that can be, and did prove to be, challenging and complex. As his mother, I could have said that I wasn't comfortable sending my son so far away and keep him at home, under my watchful eye. But I didn't. I chose to allow my son to experience what most kids love, and what he would have undoubtedly experienced had he not been born with PMD – going to sleep-away camp. I had to weigh the risks against the advantages.

During the four weeks he was away, I received a series of text messages from Bracha every night telling me about Jacob's day, followed by photographs of Jacob, alone and with others. In each picture Jacob had the most enormous smile. It was clear that he was having fun. And from the tone of her messages, it was evident that his counselors were too.

Jacob's unexpected seizure caught everyone off guard, including me. And it scared his caregivers. We debated bringing him home but Rabbi Whitman told me that as long as I was comfortable with him staying, and provided that Jake’s doctors concurred, the camp was willing to keep him in their care.

Although I am not fully aware of the lengths people went to in order for Jacob to attend camp, I do know that there were several counselors who came up specifically to help care for my son. I am extremely grateful and humbled by the generosity of these caring girls. And because of his medical situation, he required a disproportionate amount of the medical staffs’ time and attention. But all these people gave of themselves and all they wanted in return was to see Jacob’s smile and hear his contagious laugh.

The purpose of Camp Yaldei, from what I understand, is to provide Jewish children with an overnight camp experience that they would otherwise be unable to have. Jacob had the ultimate camp experience: he went swimming, played basketball, bounced on the trampoline and rode in a motor boat. But most importantly, he made a lot of friends and had a fabulous time.

Thank you to everyone who helped make his experience so special.

Jacob went canoeing!

2010-08-06T07:59:00.001-07:00

A few more photos

2010-07-18T11:57:00.000-07:00

Jacob is having a blast at camp. Here are some pictures:

2010-07-17T16:37:00.000-07:00

2010-07-06T08:54:00.000-07:00

Facts & Arguments Essay
My disabled son's first time at camp
(Original title: Jacob's Magical Summer)

From Monday's Globe and Mail Published on Monday, Jun. 21, 2010 12:00AM EDT Last updated on Monday, Jun. 21, 2010 5:22PM EDT

The decision was made. Part of me was terrified. During the week prior to Jacob’s departure, with all his clothes scattered in piles on his bed and across the floor, I packed for my seven-year-old son’s coming adventure.

To observers, I did all the things necessary to ensure his readiness for overnight camp. There were T-shirts and shorts, long-sleeved tops and pants, bathing suits and pyjamas in his duffel bag.

It was a typical precamp scene, one that many people were enacting at the same time during the last few weeks of June. But this scenario was different from that of our neighbours. In addition to his blue bag stuffed with clothes and bedding, I methodically packed a second bag with syringes, feeding tubes and various medications that Jake needs every four hours around the clock.

Jacob has Pelizaeus-Merzbacher disease (PMD), a neurodegenerative disorder that prevents him from walking, talking or sitting by himself. He is fed by a tube surgically implanted into his stomach. Although his physical abilities are severely limited, he understands what is said to and around him and he has an incredible sense of humour.

When asked by friends if I was worried about sending Jacob away for three weeks, I emphatically told them that he would be well cared for and I was confident this would be a great experience for him. I ignored the queasiness in the pit of my stomach that surfaced every time. Was sending my disabled child, whose needs are complex and constant, to camp the action of a responsible parent?

Jacob, my child with huge green eyes that sparkle when he smiles, has an ability to make people fall in love with him. There is something intangible that draws people to him and makes them want to be near him, help him and laugh with him.

Jacob’s people-magnet skill was first observed as an infant while he was in the hospital for a prolonged stay following his birth. The nurses would argue over who would be fortunate enough to have him on their charge list for the day. Our morning would begin with the lucky winner entering his room with a smile, ready to start his daily routine of medication administration.

Jacob’s charm was in overdrive when he joined a weekend activity group led by teenaged girls at a nearby high school. Jacob’s princesses, as his sisters referred to them, flocked to him and playfully fought over who would spend time with him each week.

Belle, Jacob’s favourite princess, convinced me to send Jacob to a camp for children with special needs. She selected two other princesses to accompany them. The three girls were breathless with excitement as they unveiled their plan – Belle would be with him during the day and the other two would be responsible for his overnight care.

We arrived at camp in the evening, two minutes before a thunderstorm. As the car slowed to a stop, my heart was beating quickly and my breath was shallow. It was really happening – he was going to stay at camp without me for several weeks.

An hour later, Jacob was sleeping soundly in what was affectionately labelled “Jacob’s Palace,” his room with handmade signs and pictures taped on the walls.

Unlike my son, I was not relaxed. Not at all. I was unpacking his medical paraphernalia and anxiously trying to share as much information as possible regarding his care with the camp nurse, a woman exhausted from a long first day of camp. The refrigerator, necessary for Jacob’s food and medications, was not in the prearranged spot. We were unable to locate electrical sockets in his room to plug in his nebulizer, a device needed to administer one of his medications.

After some running around on the part of the counsellors, things started coming together. With a few final reassurances from the camp directors that he would be safe, I reluctantly left my little boy in the able care of his doting princesses.

Daily reports from Belle were consistently positive: “Jacob had fun boating today.” “Your son is dangerously cute and had an awesome time on the trampoline.” And my favourite: “He’s my best friend in the whole world!”

Not content to rely solely on Belle’s updates, I visited Jacob partway through his camp session. As I walked across the lawn to the building where Jacob was, several counsellors came up to me and gushed about how much they love my son and how much fun they have playing with him.

Jacob was wheeled to me flanked by five caring counsellors and his new friend, Nosson, the nine-year-old son of the camp director who was always at Jacob’s side. As soon as I saw Jake, his huge gap-toothed smile was all the convincing I needed to know that he was in his element.

We toured the camp and met his princesses, whose number had grown exponentially. Jacob looked tanned, healthy and ecstatic. I was so proud of my little guy, and all the tension I had inside my gut evaporated.

He was excited to see me, as evidenced by the wet, sloppy kisses he kept giving me, but he was not ready to come home. As I was leaving, I asked if he wanted to come with me, to which he quickly replied, in his way, “No!” When I asked if he wanted to stay with his princesses, he didn't hesitate and immediately nodded his head “Yes.” After a few more hugs and kisses, I drove away with a sense of calm that had eluded me since the night we brought him to camp.

This month, as the school year winds down, Jacob’s clothes and medications are once again ready to be packed. Remembering his beaming smile and high-pitched squeal when I visited him last summer, I have no doubt that I am doing the right thing for him. I know that Jacob will, once again, have the time of his life. What more can I want for my son?

Jacob's report card 2010

2010-06-24T19:42:00.002-07:00

Jacob attended Ledbury Park Hebrew School for the second year in a row. He was in a class with kids his own age and had a great time. Each week, when the school bus would drop him off at home at 3:15, we would put him in the car and head up to the program for his after-school Hebrew program. When he started in the class last year, he often wouldn't make it to the end of the 2 hour session. But this year, he managed to stay alert and interested for the entire time. I'm not sure if it was the material that he adored, or simply being around kids his own age who would talk to him and be interested in what he was doing.

A few days ago, his report card came in the mail and it made me smile. The Comments section read as follows:

It was an honor to have Yaakov in my class this year. Yaakov shows a tremendous desire to learn and loves the kids in the class almost as much as they love him! Continuously throughout the day, the kids come over to Yaakov to look at his work, give him different things, or just to ask him different questions. Yaakov's two favorite times of the day are davening and music. During davening, the smile Yaakov gets on his face when all the children point to him when we sing his name in our song is unforgettable. The days that Yaakov was not there on time for davening, the children requested that we sing the song again once he arrived. Yaakov should be proud of what he has accomplished! It has been a pleasure teaching you and I will miss having you in my class.

He's already signed up for next year!

"Can I have some alone time with Jacob?"

2010-05-29T19:18:00.000-07:00

Watching friends' children interact with their siblings made me realize that my daughters don't have the same relationship with their brother that most kids have with their brothers or sisters. That fact wasn't really surprising to me but it did make me sad. Jacob's sisters don't run to hug him when he gets home from school and they have to be coaxed to say good morning when he's wheeled out of his bedroom at the start of the day.

But things are starting to change. It may be that Sierra and Jamie are getting older, or maybe because they see how many 'princesses' love spending time with him, or they are simply learning how to 'play' with him.

A few nights ago, as I was getting her ready for bed, Sierra looked at me and asked "can I have some alone time with Jacob?" She wanted to play with him by herself, something she has never done before. She asked that she be the only one in his room with him and wanted me to wait in the hall. She requested 4 minutes with him. My heart nearly burst with happiness as she walked into his room and asked him if she could play with him by herself. He smiled and I left the room.

Not to be outdone by her sister, Jamie asked for some time with him as well. A short while later, Jamie was running down the hall, pushing Jacob in his chair and making him squeal in delight. He was loving their games and his sisters were enjoying playing with their brother.

My daughters may not have the same type of relationship with their older brother that most kids have with their older siblings but they are developing a special bond with Jacob that was evident when he saw them enter his classroom at school and laughed so loudly that everyone in the room heard him.

Jacob's birthday parties

2010-05-24T19:22:00.000-07:00

Jacob is 8 and had many great parties to celebrate.

His sisters, Jamie and Sierra, spent an afternoon with him in his class at school. Together they frosted cupcakes and he watched them eat their work. Sierra and Jamie were given the responsibility of handing out the carefully packaged loot bags to each child in the class. Jacob loves when his sisters join him at school and his squeals of excitement are heard down the hall when he sees them.

We had a family party at our home so that his grandparents, aunts, uncles and cousins could celebrate with him. For the first time in his 8 years, he seemed to enjoy a family get-together. Most people took turns reading to him, talking to him and playing with him. It was the first time he was comfortable at a large family get together and we loved watching him so happy.

The best part of his birthday celebration was the party with his friends. Unlike most eight year old boys, Jacob doesn't have many friends his own age. He has tons of friends but they are mostly teenage girls, affectionately referred to as Jacob's princesses since they always wear long skirts. On Sunday night, the weekend before his birthday, we invited his friends over to celebrate. He was the center of attention (as always!) and the girls kept jostling each other to hold and talk with Jake. He was loving every minute of it.

And this weekend, we had the fourth party for Jacob. It was a joint birthday celebration for Jacob and his girlfriend of almost 3 years, Taryn. Jacob is 10 days older than Taryn so they get together in between their birthdays each year. As they do every time they get together, Taryn kissed Jacob's eyeballs and he laughed.

Without a doubt, it was his best birthday ever!

Jacob and His Sisters, Globe and Mail April 1 2010

2010-04-03T18:22:00.000-07:00

Marcy White
From Thursday's Globe and Mail Published on Wednesday, Mar. 31, 2010 6:02PM EDT Last updated
on Wednesday, Mar. 31, 2010 6:07PM EDT
Jacob’s five-year-old twin sisters know their big brother can’t speak. They know he eats by a tube
surgically implanted into his stomach and they know he can’t move by himself. They also know he
understands what they say and he loves to watch them play.
Jamie, the lankier twin with curly hair and blueberry eyes, knows how to make her seven-year-old
brother laugh. Her off-tune, high-pitched singing always results in an ear-to-ear grin from her brother’s
gap-toothed mouth. The more he laughs, the more Jamie chants, and the more she chants, the more he
laughs. They enjoy their game, and I love watching every second of their interaction.
The decision to have more children after Jacob was diagnosed with Pelizaeus-Merzbacher disease, a
severe neurodegenerative disorder, was colossal. Was it selfish of me to bring a healthy child into a
family with a child who required constant care?
During the first few years of Jacob’s life, I lived as though I was in a bubble. Most days were spent at
home, fearful of exposing Jacob to simple germs that could be life threatening for his weak immune
system. My friends were welcome in my house, but their children were not. Aside from the unknown
viruses that kids harbour, it was too agonizing for me to watch healthy kids run, speak and eat,
activities Jacob was unable to master.
When Jacob was younger, life was excruciating. My son was in constant pain and each ear-piercing
scream was like a red-hot dagger slicing through my heart. There were no hints that he would ever be
comfortable and happy.
When I started exploring the idea of a sibling for Jacob, I thought it would be terrific for me. It would
allow me to re-enter the “normal” world and experience the joys of parenthood as a “typical” parent, a
mother who was fortunate enough to teach her child how to count to 10, ride a bicycle and hold a
crayon. My parenting experience had consisted mostly of medication administration, physical therapy
and frequent doctors’ appointments. It was easy to see that a healthy child would bring some much-
wanted normalcy into my life.
But late at night, when Jacob was in the care of a night nurse because he cannot be left alone, I wrestled
over what to do. What impact would having a disabled older brother have on a younger sibling? Would
a sibling detract from the attention Jacob needed?
I reasoned that Jake would have the opportunity to interact with another child, something he rarely did
but seemed to enjoy. The stories I heard from others led me to believe that Jacob’s hypothetical sister or
brother would not be negatively affected by growing up in our family. With proper guidance, he or she
had a tremendous opportunity to thrive and become a special person because of being his sibling.
When Jake was 21⁄2, he became a big brother to healthy twin sisters. The twins were a welcome
surprise, although twins aren’t rare in our families.
As infants , Sierra and Jamie were a handful in the way that all babies are, but it was so much easier
parenting these two girls than it was caring for their brother at the same age. I knew that if the girls
were hungry they would eat, if they were tired they would sleep, and if they cried they were not at risk
of choking. They never needed me to thread a suction tube down their throat to clear their airways.
It was evident that Sierra and Jamie were a welcome addition to our family. The increased activity in
our house pleased Jacob. He smiled when we placed him on the sofa with a sister on either side of him.
His eyes sparkled when he was positioned in the front of the double stroller listening to his little sisters’
babble, squished in the seat behind him.
As I watched my girls explore their surroundings, I had a mix of emotions running through me. I
wavered between awe at the ease with which Sierra and Jamie knew how to hold a rattle or turn the
page in a book, and soul-numbing sorrow knowing that Jacob was unable to hold his beloved guitar by
himself.
The girls were early talkers, and curious. As Sierra was nearing her third birthday, she asked me why
Jacob can’t walk. Her innocent question scared me. I knew that at some point they would notice that
Jacob was different from their friends’ older brothers. It was important to me that the girls feel
comfortable asking questions about their brother, and I was determined to give them honest and age-
appropriate answers that would help them understand Jacob but not scare them.
She was satisfied with my response that his legs don’t work the same way hers do, but I knew this
question would shortly be followed by other, more challenging ones.
When Sierra and Jamie blew out the candles on their Dora the Explorer birthday cake on their third
birthday, Sierra pushed her hair away from her face and asked if I could put some cake in Jacob’s
feeding tube so he could have some too. She knew her brother does not eat the same way she does, but
she wanted him to enjoy something she loves. As my eyes filled with tears, I told her that I was very
proud of her attempt to share her cake with her brother.
My family is not typical. Jacob still requires constant care, but making him an older brother was the
right decision for us. Jake’s younger sisters are happy, smart and curious girls. They have a special
brother with a contagious laugh that can be heard any time they try to tickle him.
Marcy White lives in Toronto.

The Sleepover

2010-03-12T13:25:00.000-08:00

Friday, March 12, 2010

Our guest blog today is about a big event in every kid’s life – the first sleepover! It’s written by Marcy White, mom to Jacob Trossman, 7 (above, with his friend Batsheva). Batsheva also attends overnight summer camp with Jacob. You can read about Marcy’s work to raise research funds for Jacob’s rare myelin disorder at www.curepmd.com. Thanks Marcy! Louise

The sleepover
By Marcy White

My son Jacob, 7, had his first sleepover on the weekend. It was at a girl's house. Her parents were away for the weekend. And he had a great time.

Jake is not like most boys his age and can't do what most kids do. My little boy has Pelizaeus-Merzbacher disease (PMD), a disorder that affects all the nerves in his body. He can’t sit by himself, he can't speak and he can't use his hands to push a toy truck. But he understands conversations and has a wicked sense of humour. Physically, he is severely challenged. Cognitively, his sharp mind is trapped inside a body that doesn't work the way it should.

My young son with a smile that lights up his entire face has few friends his own age. Taryn, a girl 10 days his junior, is Jake's girlfriend. This incredible blond-haired girl with deep dimples on both cheeks donates all her tooth fairy money to PMD research so she can help find a cure for Jake's disease. Jake cracks up with laughter when she leans over to kiss his eyeballs. Another friend is Harry, a little boy who is seven-years-old and in the same class at school. Like Jacob, Harry is in a wheelchair and cannot speak. When both boys are placed on a mat on the floor, they hold hands and laugh together. When Harry's name is mentioned at home, Jacob grins.

But the majority of Jacob's friends are older girls—teenage girls—affectionately known as Jacob's Princesses because they always wear the long skirts favoured by orthodox Jewish females. These girls take turns holding my son and dancing with him. They complain about “Jacob withdrawal” if they don't see him for a week. So when one of them invited him over for a sleepover at her house, I immediately said yes.

Late Friday afternoon, with Jake's clothes, medications and liquid nutrition packed, his wheelchair and IV pole crammed in the back of the van, we set off for his latest adventure. During the car ride to his friend's house, I explained to my son that he was going to stay there for Shabbat (the Jewish Sabbath which runs from sundown Friday until after sundown on Saturday) and I would come pick him up the following evening. The smile on his face assured me that he was excited about this new experience. As I carried him into Batsheva's house, her warm embrace welcomed Jacob and allowed me to leave without a murmur of protest from my son.

Back at home, my house seemed different. It was quieter without Jacob. With both my daughters in bed by eight o’clock I realized that this was the first time since Jacob’s birth that I would be able to lounge around in my pajamas before going to bed. Emily, the night nurse, would not be arriving at 11:30 to tend to Jake's needs during the night. This would be the first time in almost eight years that my entire household was asleep at the same time. It was a normal situation for most families, but felt strange and unsettling to me.

The next morning was surreal. My typical Saturday craziness begins at 9 a.m. when Emily leaves. Within minutes, Jake is screaming and everyone is hustled into the car for a few hours of driving and time-wasting errands to Home Depot or Wal-Mart, until it is time for all the kids' swimming lessons. This particular Saturday was more serene. We stayed in bed and watched cartoons on television until mid-morning and gradually made our way to the pool in time for the lesson. It was a pleasant way to start the weekend.

But again, it didn't feel right. Jacob wasn't with us.

As the day went on, I noticed how quiet my house was. I wasn't glued to the clock to make sure I didn't miss a medication dose or run out of bibs for my chronic drooler. There was an element of tranquility in my home, a word that isn't usually used to describe our abode. But the calmer my life became, the more agitated I felt.

My mind kept drifting to thoughts of my son. I wondered if Jakey was having fun and what he was doing. Because he was celebrating Shabbat with his friends and the Sabbath rules dictate that they could not use the telephone, I was unable to get an update. As much as I wanted to, I could not get in touch with him, short of showing up unannounced at his friend's house. I reassured myself that he was in capable hands and if something terrible happened, surely I would be notified. I felt helpless but was trying to be strong so Jacob could have this incredible experience.

At 7 p.m. I went to pick Jacob up from his adventure. As I hurried up the front stairs and waited at the door, my heart beat hard with apprehension. Questions were swarming around my brain: Was he able to sleep in a new bed? Did he wake up scared and unsure of where he was? How was his day?

When the door opened and I saw my gap-toothed son sitting in his wheelchair in the middle of the living room, my racing heart slowed. When I was close enough to ruffle his thick hair and give him a big hug, I knew that he’d had a wonderful time.

My son had a sleepover at a friend's house. He had a fantastic time and by all accounts did not miss his mom. I, on the other hand, missed him terribly. But despite my internal struggle with his absence, I know I did the right thing in letting him go. Jacob has many medical issues that make his life more challenging than most. But he deserves to have regular childhood experiences and I will do whatever I can to facilitate them. Now if I can figure out a way for him to try waterskiing...

Purim

2010-03-01T19:00:00.000-08:00

We were invited to Yaffi's house for Purim - all 5 of us. And we went. All 5 of us.

This might not sound unusual for most families, but for us it was a rare occurrence (being invited for Purim was a first for us too, but that's another story). And the stress leading up to the dinner was not insignificant.

Although a bit shy at first, Jamie and Sierra were great. I was not worried about how they would act, I knew they would love being around so many princesses. All it took were a pair of gigantic lollipops and lots of girls, their age and older, in beautiful dresses and they were having a ball. They were too busy to sit at the table and eat dinner because there were so many girls to play with.

Jacob, on the other hand, was a different story. His behavior in unfamiliar surroundings can be cause for concern, to put it mildly. In fact, if there are a lot of strangers and noise, Jacob's behavior is quite predictable - he screams. He screams and screams until his hair is soaking wet, his face is red and everyone is extremely uncomfortable listening to his heartbreaking cries. Then we go home and those who stay behind breathe a sigh of relief at the welcome silence and feel sad that Jacob did not enjoy the event.

When Yaffi invited us to her house to join her family for Purim dinner, I accepted. It never occurred to me to leave Jacob at home, but I did wonder how I could best prepare him for the anxiety that usually accompanies him to parties.

I told Jacob about Yaffi's invitation and asked him if he wanted to go. He said yes. I decided to bring Leazel, one of Jacob's nurses, along in case he needed to go into a quiet room away from the commotion or if he wanted to go home early.

As we were getting everyone loaded into the car, he started crying. Within seconds Jacob's cries escalated into full blown wet-hair-red-face screams. But we carried on. He screamed the entire drive to her house. We stood outside her house for a full ten minutes waiting for Jake to calm down before descending on Yaffi and her family, even though we were already late.

Standing outside the door, waiting for it to open, I silently hoped the evening would go ok, and that Jacob would stop crying.

Yaffi opened the door, saw and heard Jacob, bent down and spoke to him the way she usually does - as a typical 7 year old. And he stopped screaming.

I don't know exactly what happened next, but while everyone was sitting at the table, Jacob was there too, at end with all the kids. Partway through the meal, with the girls playing with their new friends and the adults still enjoying the incredible and countless dishes placed along the large table, I noticed Jacob sitting next to Yaffi at the table with us. He was happy, as evidenced by the enormous grin on his face. At one point he was playing with the balloon he was holding, laughing every time it escaped his grip and floated to the ceiling. He actually joined us at the table. And he was having fun, even when the conversation wasn't directed at him. He was watching us, listening to the conversations and really enjoying being part of the festivities.

Every time I looked over at him and saw him sitting across the table from me, I felt so proud of him. I don't know what Yaffi said to him, or what it took to get him comfortable, but this was the first time he spent an extended period of time at the table with anyone. And he was surrounded by people he had never met before.

Later that night, when Jake was in his pajamas and ready for bed, I asked him if he had fun and he nodded his head yes. I told him how proud I was of him and that I was so happy we were able to have this wonderful experience together.

Purim is my new favorite holiday.

The trials of being my son's mother

2009-11-30T17:27:00.000-08:00

With his nurses, caregivers and friends he's charming and lovable. With me he's angry and inconsolable

Marcy White

From Monday's Globe and Mail Published on Monday, Nov. 30, 2009 12:00AM EST Last updated on Monday, Nov. 30, 2009 6:28PM EST

As Jacob and I make our way down the crowded aisles at the grocery store, I am acutely aware of strangers glancing at us. They see a mother and son shopping together. But we stand out because we are different.

Jacob can't sit or stand without support, so I can't secure him in the seat at the front of the cart, or have him stand at the end, holding onto the metal basket as I push a food-filled wagon through the store. Instead, we make our way down the aisle with me pushing him in his wheelchair and him balancing our selected items on his lap.

Like many kids his age, Jacob does not enjoy this errand. As soon as I stop pushing him to grab an item off the shelf, he complains. Jacob knows what he wants, but unlike his peers he can't run ahead and explore on his own. This frustrates him, so he screams. As I try to console him, he screams louder.

While many parents can treat their little helpers to a candy or a bag of chips at the end of a shopping expedition, I don't have this reward at my disposal because Jacob can't eat.

My seven-year-old son has Pelizaeus-Merzbacher disease, a rare neurodegenerative disorder that affects all aspects of his life. Jacob cannot sit by himself, walk or speak. He is fed by a tube that was surgically implanted into his stomach when he was an infant. But he understands what is said to him and loves listening to silly jokes.

Ever since he was born, Jacob has had a special effect on people. There is something intangible that draws people, and makes them fall in love with him. Year after year, I have watched my son attract people to him and melt their hearts with his infectious laughter and mischievous grin.

But when they leave, he changes. He screams, he protests and he cries. Gone is the charm, the lovable smile and the twinkle in his green eyes. I am left with an angry little boy who is inconsolable. Why can't I elicit the same wonderful qualities that his nurses and friends do so effortlessly?

I am in charge of Jacob's care, his schedule and his endless appointments. I am the one who accompanies him to the doctors he hates. I am the one who holds his hand and walks with him in the hallways of hospitals while we wait for hours for the dreaded visits.

I feel like a nasty mother who allows therapists to subject him to painful and difficult exercises. It's no wonder he prefers his caregivers whose main goal is to entertain and please him.

As Jacob's mother, I know he is receiving the care he needs. His frequent screaming in my presence is purely behavioural, designed to manipulate me into giving him what he wants. My heart beats quickly as I run through the list of things that might calm him down, like chasing our cat Spot, helping him strum his red guitar, reading a book or telling him a story.

When nothing else works and I am at a loss for what to try next to quiet his screams, I resort to the phone call. At this point, Jacob has been yelling for so long and with such vigour that his face is red and his hair is so wet he looks like he just had a shower. Listening to his favourite person, Belle, on the telephone is a guaranteed mood changer. It's the one thing that will always calm him down and make him smile.

In my weaker moments I feel sorry for myself. I am upset that I can't soothe him. I am his mother; I should be his favourite person.

When the crisis is over and peace has been restored, I look at my curly-haired child and know that his behaviour, in some way, is typical for any child.

Most parents will agree their children behave better with those who aren't their parents. And Jacob, in this respect, is a regular child. Intellectually I know this, but it hurts. It's heartbreaking to witness someone else pacify my child, something I repeatedly try but fail to do.

Compared to Jacob, his healthy twin sisters are easy to parent. At 4½, they are typical children. When they are upset or hurt, they run to me. They get angry when I go out and leave them in the care of someone else. As their mommy, I can make everything better. My kisses fix their boo-boos and they love it when I play with them. Why can't I fill the same role for my son?

I try.

In September, after a stressful doctor visit, I brought Jacob with me to buy a coffee. He enjoyed sitting on my lap, watching the cars drive by the store. It has become our special outing, on our way home from an appointment or when we have a free hour on the weekend.

I look forward to these moments of quiet and peaceful interaction with my son. When I ask if he wants to come for coffee with me, he smiles and slowly nods his head. My heart expands and I feel a whoosh of love for my little boy.

It is hard being the one he associates with dreaded appointments. It is challenging to find things Jacob likes to do with me. But I will persist because I love spending happy times with my son. I will keep trying to be the one he wants when he is sad. Because I am Jacob's mom.

Marcy White lives in Toronto.

Illustration by Steve Adams.

Jacob's Soul

2009-10-18T16:02:00.000-07:00

I've been told that Jacob is a "pure neshama" or pure soul but didn't really understand what that means. I was given the following explanation and thought that maybe, on some level, it makes sense. You can make your own assessment:
G-d's Handicapped Children

(IsraelNN.com) Question

A friend gave birth to a baby with a rare condition that has rendered her severely handicapped. She is not expected to live much past her tenth birthday I can't understand why G-d does that. If life has a purpose, what's the purpose of such a short sad life?

Answer

Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is a maze of diverging pathways, both good and evil and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption while acts of good elevate the soul. Every act of evil makes a blemish on the soul.

Some souls are so pure it simply isn't worth the gamble These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message.

So these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin above evil. From a purely physical perspective we call them disabled or handicapped. From the perspective of the soul, they are protected. They will never sin. Their sojourn in this world is often brief and, in terms of this world, may seem sad. But they have retained their purity. And they have fulfilled their mission.

These special souls remind us that true love doesn’t need a reason. We often love others for what they give us. We love our children because they are cute, smart and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure.

When a child is born that will never achieve worldly success, cannot provide the usual source of pride for her parents, all extraneous reasons to love her fall away and what’s left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are.

These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them, and the parents and friends who care for them. And we can only thank them all, for giving us a glimpse of what true love really means.

A fantastic experience

2009-08-04T07:25:00.000-07:00

How can I properly thank Jacob's princesses for giving him the most incredible experience of his life?
By all reports, including his, he had the best 21 days imaginable. Every picture I saw (and I'd love to see more!) showed him smiling. And the smiles were different from his regular grins - he had a more relaxed look about him, something I can't quite explain but do notice.
Heading up to camp I was pretty sure he'd have fun. Daily doses of Bracha, Shoshana and Batsheva would ensure a happy time. But he had more than fun. Not surprisingly, he added quite a few princesses to his harem and loves being the center of attention (my son is not shy!).
I was thrilled when I heard he also made a friend, a boy around his own age. I was told that Nosson and Jacob were inseparable. Jacob frequently joined Nosson and his family at meals, and when his parents wanted to locate him, they simply had to find out where Jacob was.
When we drove up to get him at the end of his camp stay, Andrew put Jake's things in the car and we were ready to go. But his princesses were not willing to relinquish their prince.
As Jacob was passed from group to group, he left a stream of teary-eyed girls in his wake. Each person wanted to have their last moment with our special boy. They wanted to watch his face break into a huge smile when he heard their jokes and listen to his squeaky giggle. It was hard taking him away from them. The one thing that made it easier for Jacob was having Bracha in the car next to him for the next 6 hours!
Thank you to all the warm and loving people who opened their hearts (and arms!) to Jacob at camp. You helped him have a fantastic experience.

The Time of His Life

2009-07-12T20:39:00.001-07:00

Today Marcy and I took the twins up to Jacob's summer camp to see how he's doing after 12 days away from us. We've been talking to him on the phone and texting Bracha daily, but we hadn't seen him in ages. From the moment we got there till the time we left he was so excited and squirming around. He looked great. Older and tanned too.

I think he was really happy to see us and to show us his camp. He's made a ton of friends at camp. Everyone loves him. As always, he's the center of attention with a swarm of princesses around him. I think he was glad we came. I can't speak for Marcy, but I was a bit relieved to see him in his element so happy, truly having the time of his life.

Jacob's report card

2009-06-15T13:22:00.000-07:00

Jacob attended Ledbury Park Hebrew school on Tuesday afternoons after school during this past school year. He was placed in a classroom with typically-developing kids the same age as him. He had a great teacher and enjoyed coming to class each week.
Contrary to the ignorant statement by a director of education at a local Hebrew school who believes that exposing young children to kids like Jacob is "too traumatic", Jacob's report card illustrates a perfect example of how everyone can benefit from being around my incredible son.
Morah Hadassah, Jacob's teacher, summarized Jacob's year in the following report:
"Having Yacov in our class really added to the learning experience. His bright smile and big eyes always brought joy to our class. Yacov's favorite part of the day was davening, whenever we came across the word "Yacov", all the kids would point to him. Yacov would get so excited each time and everyone enjoyed watching his face light up. Yacov shows an interest in learning about Judaism. Having Yacov in our class was more beneficial for all of us - the students learned from him and loved reaching out and giving to him. When Yacov was absent or late, all his classmates would ask for him. The students love Yacov and looked forward to his coming each week. I truly enjoyed having Yacov in my class. Thank you for the experience."
And I thank you, Faigel and Hadassah, for giving Jacob this wonderful opportunity.

Jacob and his Princesses - from Canadian Jewish News - June 8 2009

2009-06-09T12:38:00.000-07:00

Jacob and his princesses
By MARCY WHITE, Special to cjnews.com
Monday, 08 June 2009
“Have you lost your mind?” Megan shrieked into the phone after I told her about Jacob’s summer plans. My friend did not attempt to hide her disapproval, which was heightened when I told her three Orthodox Jewish teenagers would be responsible for his well-being.

Maybe I did lose it, I’m not sure. And I started doubting my parental abilities, again.

Jacob, my green-eyed son, has Pelizaeus-Merzbacher disease (PMD) a degenerative neurological disorder that prevents him from sitting by himself, walking, talking and swallowing. It does not, however, impair his ability to understand conversations or affect his amazing sense of humour.

As a parent of a child who cannot speak or move independently, is it irresponsible of me to send him to Camp Yaldei, an overnight camp, with teenage caregivers whose lifestyle and beliefs are different from mine?

The first time I noticed the figures in black was when I was a child going to the bagel factory with my parents on a Saturday night in Montreal. The bagels were hot; the car windows would fog up during our drive home and filled the interior with the aroma of warm bread and sesame seeds. I remember watching the men dressed in black suits and black hats during the hottest nights of July.

Following a short distance behind these shadowy figures were the women, wearing shirts with long sleeves and long skirts, pushing baby strollers, older children holding the hands of their younger siblings. I watched these people and wondered why they chose to have so many children, why the women agreed to wear wigs, and I thought how awful it must be for the children to be raised without television.

When Jacob was 16 months old, I hesitantly enrolled him at the Zareinu Educational Centre, a school for children with medical, physical and developmental challenges. I was reluctant to take him to the program for several reasons, one of which was that it was run by the Orthodox Jewish community. I feared Jacob would not be accepted because our family was not religious; we did not even belong to a synagogue.

At first, I was uncomfortable in that surrounding. It was difficult being in a group with eight babies and toddlers with various challenges, but it was even harder when I realized that Jacob’s issues were the most severe and complex in the class. Nobody commented when I wore jeans to class instead of the long skirts preferred by the other mothers. When Jacob was engaged with a therapist, I had time to chat with the others. I learned a lot about their religious beliefs, and I started to realize how misinformed I was.

A few years later, I saw a flyer for a weekly program for kids like Jacob, children with special needs. Yedidus, which loosely translated from Hebrew means “friendship,” was held at Bais Yaakov High School, an Orthodox school for girls. I considered sending Jacob but was concerned that the lack of adult supervision in the program would expose my son to danger. My friends, Megan included, ardently supported my decision. They convinced me that I should not leave my defenceless little boy in the care of girls who some would consider children themselves.

The following year, when Jacob was four years old and I was desperate to find an activity for on the weekends, I enrolled him in Yedidus. The group was organized by girls dressed in long, dark skirts, their hair styled in identical ponytails. They were kids in grades 10 through 12 and ran the program every Sunday morning when most teenagers are still sleeping, tired from a night out partying with their friends.

This religious community gives their children more responsibilities at an earlier age than those who lead a secular life. They marry younger, have children younger and are taught to be charitable, financially as well as with their time, at a much younger age. A 16-year-old in the Orthodox community is much more responsible and more interested in helping a neighbour than a typical teen, who is more concerned with the hottest music and the latest trends.

Some of the most wonderful examples of compassion and love are showered on Jacob when these kids play with him, talk to him and spin him in circles to make him laugh. These girls, who dress in skirts that fall four inches below their knees, help reinforce Jacob’s younger sisters’ belief that princesses only wear skirts.

Jacob is a fixture at Bais Yaakov on Sundays and is adored by almost all the students at the school. At 10:30 on Sunday mornings, as I push his wheelchair into the driveway of the school, Jacob starts squirming. His obvious excitement when he realizes where we are is restrained only by the seatbelt and foot straps that secure his body to his chair. The chorus of high-pitched “hi, Jacobs!” erupts as soon as the first teenager spots us. As we enter the building, a counsellor affectionately whisks Jacob out of my arms and plants kisses on his soft cheeks.

Sarah, Jacob’s counsellor during his first year at Yedidus and his favourite person in the world, has seen Jacob at his best and at his worst. Just mentioning her name makes him smile. Hearing her raspy voice on the telephone is enough to stop him from screaming regardless of the cause of his upset. She has witnessed Jacob’s chocking episodes, seizures, hives, general discomfort, and more than one episode of projectile vomiting. She is extremely capable with Jacob, and I often forget she is a teenager.

Some of my family and friends shake their heads in disbelief (or is it disapproval?) when they hear we have no qualms about entrusting Jacob’s well-being to this group of girls. They look surprised (or is it shocked?) that these kids know how to feed him through the tube in his stomach, an activity most adults in my life are too fearful to learn. I imagine they would consider me irresponsible (or is it crazy?) when they learn about his latest adventure, three weeks at an overnight camp in a neighbouring province.

But I won’t let their opinions sway my decision this time. I know Jacob will have an incredible experience surrounded by people who love him and enjoy making him happy. I know he will be safe. And I know that I am lucky to be part of this warm and generous community.

Marcy White lives in Toronto.

Mother Knows Best - from Exceptional Parent - May 6, 2009

2009-06-09T12:37:00.000-07:00

From EP Global Communications

Mother Knows Best

Posted in: Regular Story

By Marcy White
May 6, 2009 - 7:22:06 AM

“I’ve never seen anything like this before” were the first words I remember a doctor stating the moment my son was born, as I listened to the donkey-like sound my son made. From where I was lying on the delivery table, it looked like his ribs were made of rubber and folded in half with each noisy inhalation. With every breath he took, his ribcage would collapse. Of course the doctor had never experienced this. We learned, five long, agonizing days later that it was because both of Jacob’s vocal cords were paralyzed, something so rare that the specialists at Sick Kids Hospital had not seen in over 15 years.

Until then, my only experience with doctors had been for routine check-ups and the occasional sore throat. Doctors had the answers; they diagnosed the problem and prescribed the remedy. And it usually worked. Not this time.

It wasn’t until 10 months after I heard those frightening words that Jacob was diagnosed with Pelizaeus-Merzbacher disease (PMD), a rare, neurodegenerative disease. I was at home playing with my son when the telephone rang. The doctor informed me that one of the many tests Jacob took came back positive. He had PMD. I had never heard of this disease and did not know what it meant. When I started asking questions, I was informed that there is no cure and no treatment available. According to the medical professional, our only option was to treat each new symptom as it appeared. I would not accept that this was the only option. My role as a mother was to keep my son happy, healthy, and safe. I would not sit back and wait for the disease to destroy Jacob’s body.

I lived my first year of motherhood as if I were in a bubble. While other new moms were taking their babies to music classes and various “mom and tot” programs, I was at home, isolated from the rest of the world. Because of his weak immune system, a simple cold was life-threatening for Jacob. I was not willing to risk infection by inviting other children into our home for visits or taking him for a walk in the nearby mall.

Instead, as I held him for two hours at a time for his feeding, his tiny head would get so hot it soaked through the layers of blankets that were between us. Without stopping, I was uttering the same two syllables in slow motion: Jaaaacobbbbb, Jaaaacobbbbb for hours. My biceps were burning from holding his little body as still as possible as any movement might cause him to vomit. This process was repeated every three hours. My clothes were drenched and stank from partially digested breast milk that was painfully pumped for 20 minutes, seven times a day, month after month.

Being a mother took on a new meaning for me. Yes, I held my son like any new mother, but it was different. Very different. Nothing like I thought it would be. I had to make sure I did not dislodge any of the tubes that helped him live. Yes, I fed my son like any new mother, but it was different. Instead of holding him to my breast or placing a bottle in his mouth, I had to connect him to a feeding system that dripped pumped breast milk into a tube that was inserted into his stomach, bypassing his mouth. And yes, eventually I was allowed to take him for walks in his stroller, but it was different. We walked in the halls of the hospital, stopping occasionally so I could place a suction tube in his mouth to help him breathe.

This was not the way I visualized motherhood. Seeing a healthy child was so painful for me, I felt like I would collapse in tears. When I saw a baby that was the same age as Jacob, I had to look away. I couldn’t help thinking my son should be sitting like that by now; he should be able to smile, too. When I listened to a mother complain about her child needing glasses, I wanted to scream at her and tell her to be thankful for having a child who could walk and talk.

As we were given the freedom to venture farther away from his room, I started gaining confidence in my ability to feed him by myself and was beginning to overcome my revulsion at threading a tube up his nose and down his throat for the deep suctioning he sometimes required. I was terrified. I can still feel my inexperienced hands trembling as I snaked the tube in his nose until it reached the point where it would turn, move down his throat and clear the thick mucous that was impeding his airway. I was not enjoying this part of motherhood. Not one bit.

Then, all of a sudden, I realized that I had changed. Somehow along the way, in the midst of all the feedings, appointments, and isolation, I seemed to have stopped saying that I couldn’t handle it. I stopped feeling like I was going to scream every time we were told that there was nothing anyone could do. I stopped shaking every time I had to suction Jacob, and I stopped apologizing to strangers in waiting rooms for Jacob’s screaming.

Eventually I stopped saying “I can’t handle it.” I don’t know exactly when, but at some point, I realized that I can, and I had to.

It is well known that mother-bears will stop at nothing to defend their cubs. And that was me, I realized. Perhaps my child had disabilities, but still, I was a mother-bear. I had found strength and courage from reserves located somewhere deep, deep inside me. I started to question the medical professionals. I began to realize they did not have answers, and even though many were reluctant to admit it, I learned they knew little about how to help Jacob. But as time passed, as I became more comfortable with the tiny fighter who is my son, I realized that I could not depend on the doctors for the answers. Jacob is my son. I know him better than a doctor who examines him for 10 minutes, despite the plethora of degrees hanging on his office wall.

The doctors were doing their best, but I was the expert. During one of our many hospital visits, a doctor told me that he wanted to surgically remove a piece of Jacob’s skin for analysis. I asked why. I wanted to know if the results would lead to a treatment or if it was simply to add more details to Jacob’s voluminous medical file. At another appointment, a specialist suggested a second MRI. I weighed the potential benefits against the risk of not being able to remove the breathing tube required for the anesthetic. As my confidence grew, so did my voice. I decided that any medical test or procedure that Jacob would undergo must have the potential benefit of bringing us closer to a treatment. I would not let him suffer for the sake of gathering additional information that would be useful only in the context of academic publications about rare disorders.

Some of the professionals I’ve encountered have labeled me a demanding parent; others call me difficult because I don’t blindly accept what they say. I know what I am. I am a mother-bear who will stop at nothing to protect her cub. I will stop at nothing to make sure Jacob has the happiest, healthiest, and safest life possible. Because frankly, that’s my job.

For more information about PMD, visit curepmd.com.

Great News for Over Expressers

2009-04-22T16:31:00.000-07:00

No I don't mean good news for bloggers or drama queens, I mean great news for PMD kids with duplications.

Marcy and I just got back from Wilmington DE where we participated in the PMD Symposium at AI Dupont Hospital. The first day was action packed lectures given by several scientists describing their latest publications (or soon to be in some cases).

Among other things, Dr. Klaus-Armin Nave from the Max Planck Institute for Experimental Medicine in Germany presented some experiments that showed that an anti-progesterone drug can reduce the PLP expression in his transgenic mice with PLP duplications. As many of you already know, turning off the PLP gene may have a therapeutic effect since the null syndrome is not as severely debilitating as most other PMD variants. Now we just need that drug to go through the FDA approval process. Fortunately, the drug is being developed for a lucrative disease like breast cancer, so the pharmaceutical company has a real vested interest beyond just our poor over expressing friends.

Dr Skoff presented some more interesting work with the same over expressing transgenic mice from Dr. Nave. He found that a simple anti-biotic could help prevent oligos from dieing from apoptosis. This could reduce the severity of the condition and slow the degenerative process. I believe Dr. Skoff and Garbern are trying to get NIH funding to do further studies to get this closer to treating our over expressing PMD kids.

While, I'm very happy to see this tangible progress, it does not help my Jacob who has a very severe point mutation, T257C. One obvious option is to see if Dr. Nave's anti-progesterone helps mutant mice with a condition more like Jacobs such as the Jimpy. Don't worry, Marcy and I are on it like a wet rag!

Today I had an interesting conversation with a guy from the NIH Chemical Genomics Center. They have a fully robotic system designed to perform massive in-vitro drug tests quickly. For example, they would do 3000 different compounds in 15 different dosages each in a sample of 100. With controls it's pushing half a million tests that they run automatically in an afternoon! Of course you need to develop a suitable assay - or screen test - that can be automatically executed with their robotics. We first heard the shotgun approach for treatment at the previous PMD Symposium in Wilmington from Dr. Kamholz nearly SIX years ago. I can't believe we didn't do anything about it in all these years! Can Jacob ever forgive us? Well, better late than never I figure. I will follow up with this guy to see what's needed to take our shot in the dark as soon as possible.

There are a number of other interesting research efforts still worth exploring. In fact, Dr. Kamholz told us about a Canadian with some very interesting primary research with transgenic mice in search of the keys to PLP regulation. You'll have to wait for another blog for more on this.

Meeting Other Families

2009-04-21T11:00:00.000-07:00

Andrew and I attended a PMD conference this past week where we had a chance to meet with some of the researchers and hear about the latest developments in the field. That's what I expected. I also expected to meet some families who have kids with PMD.

What I didn't expect was to feel so comfortable in a room with so many wheelchairs, suction machines and several kids being tube fed at any given time. Basically, we were in a room with families like ours. Many had healthy kids, in addition to the PMD ones. There was something comforting about being surrounded by this group of people.

Some kids were able to walk and speak. Most kids looked more comfortable in their wheelchairs than Jacob ever does in his. An amazing thing was that most of these kids are happy and have the same silly, mischievous sense of humor that Jacob has. There was a definite feeling of unity among these families. We share something that only we can fully understand. That part was great.

The sad part was that last time we were at this conference, shortly after Jacob was diagnosed 6 years ago, we looked around the room and thought that Jacob looked so much stronger/healthier than the kids we met. This time things were different: Jacob is older. He has a severe form of the disease. And it's degenerative, so it gets worse over time.

Looking around the room last week, I realized that most of the kids seemed healthier than Jacob. They can move their limbs more freely and are more relaxed. This is when I was forced to acknowledge that the degenerative aspect of this disease has started to affect Jacob. Despite all the therapy and movement, it is still progressing. This makes me more determined to find a treatment or push for a cure. Even a small step forward in treatment options can have a profound affect on Jacob's quality of life. But we have to hurry.

Proud Sponsors of the PMD Symposium April 17/18 2009

2009-03-22T10:48:00.000-07:00

The PMD fund of Jacob's Ladder is proud to sponsor the

Pelizaeus-Merzbacher Disease Symposium

A world where there is no PMD: How to get there through Research

Friday and Saturday, April 17-18, 2009 -- Alfred I duPont Hospital for Children Wilmington, DE

Marcy and I are happy to sponsor the second PMD Symposium mid next month. Of course we will be attending as we did five years ago when we first learned of the horrible disease that plagues our Jacob. We met so many valuable US based medical researchers who have helped us with our ongoing research efforts to find a treatment for Jacob and other boys like him.

While our first two experimental investments have not yet produced treatments, we believe we're getting closer and closer. In fact, we're already in negotiations for our next investment with a speaker who will present some recent work at the symposium next month. Expect to hear more about this soon. We are very excited about the potential for near term treatment opportunities with this next round of experimentation. Some experimentation using off-lable medication with animal models with PLP duplications has already successfully shown down regulation of PLP expression along with verifiable and quantifiable clinical improvements. We hope to show that similar benefits can be had with severe point mutations like Jacob's.

This is extremely exciting and we can barely contain ourselves. But as you probably know, medical research is both extremely expensive and unbelievably time consuming. Your donations are greatly appreciated and going directly to fund very important research that could help Jacob and other PMD kids like him very soon. We'll keep you posted.

Tross out

Sheltered from my son, by Marcy White

2009-03-02T05:04:00.000-08:00

We're very proud of Marcy for getting the following article published in today's Globe and Mail, Sheltered from my son, by Marcy White March 2, 2009

It's official. They are seizures.

2009-03-01T13:40:00.000-08:00

I can't say it came as a surprise, it's something we've been wondering about for a long time. We even have the prescription for the medication all ready to go, but we were holding off, waiting for confirmation. It came. Today. Jacob has been having seizures.
They aren't the typical thrashing-around-just-like-in-the-movies kind of seizure. Nothing with Jacob is 'typical'. They mostly happen at night, as he's falling asleep and while he is asleep. It looks like he just heard a loud noise and was startled. It's over within seconds but it happens every night, and several times a night when he is sick. We finally caught a few 'good ones' on video (thanks to the video camera mounted over his bed so we can watch him while we are in another room during the few hours we are nurse-less between shifts) and forwarded the clip to his neurologist.
So now we have another medication to introduce into his small body. He is on so many different meds: 2 for reflux, 1 for muscle spasms and 1 for his lungs. And now one for seizures.
The one bright note in this is that his new medication has sometimes shown a positive side-effect in PMD kids - it may slow down PLP production, which in English, means that there is a chance it will lessen the severity of the PMD symptoms. So for now, we're keeping our fingers crossed and hoping for the best: no more 'startles' (it's still too hard to call them seizures) and fewer symptoms.

It's all about the SMILES

2009-01-19T08:20:00.000-08:00

Those of you who know us well, already know how this beautiful child can scream inconsolably for hours on end, especially when he's with mommy or daddy. Where's Bracha when he needs her?

The picture you see is a rare moment captured forever. You see Jacob does have fun with his dad from time to time. Yesterday, I had Jake for the morning because his normal Sunday program was canceled this week so the girls could study, or not ;-). As soon as his nurse left, we jumped into the car to go to Home Depot. How's that for a masculine thing to do on a Sunday morning?
Jacob was pretty good in the store; only complaining when we stopped for too long while I tried to find something. As we were driving home, I asked him what he wanted to do. After several strategically prepared yes-no questions, he said he wanted to go to "Unky's place". He refused to agree to behave if we went, but he was probably smart enough to know I would still go there even if he didn't promise to be good. Sure enough as we got to Bloor, he'd had enough. I managed to coax him the last couple miles to Morty's place.

He was like a different kid. He was so happy to see his Unky that I just focused on all my fixit guy tasks while Morty and Jacob did what they do. When it was time to leave, Morty passed me Happy Jacob to put on his coat. We managed to have a sweet moment before leaving and Mort was able to catch it digitally forever. Thanks Mort, but an even more special thanks goes to Jake!

Saturday mornings are an interesting contrast of highs and lows; beginning with the lows. Usually, Emily leaves at 9:00 am on Saturday morning. But this past Saturday she had to leave early. It usually doesn't take more than a couple minutes of her absence for the screaming to start. This Saturday was no different except that we had more time to kill. We piled all the kids into the car and turned on "Mamma Mia!" in the car. The girls loved it and Jacob tolerated it. We went to my parents house to water plants etc. followed by our first trip to Home Depot for the weekend. Jacob hit his threshold while we were waiting for someone to get pricing information on our way out.

We dropped off the girls and went to his weekly swim with daddy at the Bloorview Snoozlen pool. Again, Happy Jacob returns! He loves the water. He always likes to start with this hose that can spray warm pool water everywhere. I think he likes to get people in the face - including himself. After this warm up, we do a little daddy dunking and eventually end up "barefooting in the bubbles" That's when we get the screams of joy followed by hearty "belly laughs" that can be heard by the deaf woman who runs the pool! I really love our Saturday swims and I know he does too.

The most incredible letter to Jacob

2009-01-10T11:12:00.000-08:00

It's been such a long time since we've updated this blog and I thought it would be a great way to restart the postings by sharing a letter that was recently written to Jacob by one of his teachers. She manages to sum up the effect Jacob has on so many people in such a beautiful and eloquent way:

To my very special friend Jacob,
So you were my first friend to know I was getting engaged and it was so much fun telling you, but then again, with you everything is so much fun from dancing in the bathroom, to writing on the wall to catching up on the latest gossip.
Jake, what is your secret? What makes everyone you see fall in love with you? Is it the twinkle in your eyes, your delicious smile or is it something much deeper? I think the fact that a little boy like you can persevere and work so hard with such joy in life, brings out the best in everyone you meet. You just can't help loving a teacher like you.
Jacob, I think you're...an inspiration!
Keep making your parents, family and friends proud. I love you always.

Bais Yaakov presentation - May 28, 2008

2008-05-28T15:53:00.000-07:00

I am honored to have the opportunity to talk to you today. You might be aware that my son Jacob has been part of the Yedidus program for the past 2 years. You might also know that I think the girls in the program are some of the most amazing people I’ve ever met.

I’ve been told that Jacob is a familiar face at your school, thanks to the many pictures Bracha has of him. But for those of you who may not know him, I thought I’d share some images with you.

As soon as Jacob was born, we knew something was wrong. He had trouble breathing and couldn’t eat. He spent the first 3 months of his life in the hospital. Jacob was our first child so in addition to learning how to take care of a baby, we also had to learn how to care for a very sick child. Among other things, we had to learn how to feed him through a tube in his stomach because he couldn’t swallow. We had to be very careful not to expose him to any germs because even a simple cold could be life-threatening for him.

We lived the first year and half of Jacob’s life as if we were in a bubble. We spent most of our time at home and had very little contact with our friends. We had moved in to a new house shortly after Jacob was born but didn’t feel comfortable socializing with our neighbors because of Jacob’s health issues. Most of our family and friends were too scared of Jacob’s needs so we didn’t have many people willing to help us care for him. Nobody was comfortable being alone with him. These were very hard and lonely months. It was painful for us to get together with our friends who had children. Seeing other kids run and talk and eat was so hard for us. It made us see all the things Jacob couldn’t do.

Somewhere along the way, things started to change. This change was gradual and I don’t really know when it started but at some point we realized that our special boy brings so much joy to those around him. He has the most amazing smile and a giggle that just makes you want to laugh too.

The first time I heard about the Yedidus program I was not comfortable having Jacob participate because I thought that since adults we knew wouldn’t spend time with him, I figured strangers, and teenaged strangers, wouldn’t be comfortable either. Boy was I wrong!

The following year I decided to try, and I enrolled Jacob in Yedidus. One of the assistants at Jacob’s school was a former student here who thought it would be a great experience for him. She arranged to come to his first session at Yedidus and help familiarize his counselors with his needs.

Although the program runs until 1 in the afternoon, I thought I would take Jacob home early so that I can feed him. None of our friends or family was comfortable with his tube feeding so I just assumed that would be the case with his counselors. Again, I was wrong. I was shocked when I was told that they would take care of his feeding. I couldn’t believe these teenagers would feel comfortable with that task.

I came to the first session armed with a full page of step-by-step instructions on how to set up his feeding pump and run the feed. It took less than 5 minutes for me to see that they really didn’t mind doing it, and weren’t even afraid. This, to me, was amazing. They were so welcoming, warm and excited to have Jacob join the group.

As the weeks went on, I continued to be impressed with the skill, compassion, energy and love that is showered upon my son, and the other kids in the program, each week.

I know there are many girls who contribute to the success of the program, and I want to share a few experiences that stand out in my mind.

Bracha told me that whatever Jacob gets from her, he gives her twice as much. If that is true, then together they give me double that. As soon as we mention her name, Jacob’s face lights up. When he hears her voice, he squirms so much that he would fall out of his chair if his seatbelt was unfastened. It is amazing and heartwarming to watch them together.

One Sunday during this past year, there was no Yedidus – I don’t remember why. Dina was so sweet to ask if Jacob could come to her house for a visit. It felt so good to know that there really are people who love him, want to spend time with him and are not afraid of what might happen. When I arrived at her house to pick him up, I saw a beautiful scene. One of her younger sisters was holding Jacob and the other sisters, I think there were 4 others, were all around him. The girl holding him announced that she figured something out: when Dina would be old enough to run Yedidus, she would be old enough to be his counselor.

Last year was a year of learning for me. I learned that there are people who have the compassion, energy and desire to work with special children like Jacob. Unlike most other teenagers and adults, they are not afraid of the challenges and differences that a child with a serious disease has. The girls from Yedidus know that each child has a need to be stimulated, spoken to, and held. They see how these kids’ faces light up when something is funny, or when someone takes the time to read them a story. I learned that there is an amazing group of girls at Bais Yaakov who truly love my son and I learned that these girls don’t realize how remarkable they are.

This year I made a conscious effort to tell people about the program, the school and the girls. I have friends and family who are surprised that I leave Jacob with kids. I know they question whether it is a smart thing to do. I have no doubt it is the best thing I could do for my child.

So, last year was my year of learning, this year was my year of talking. Next year will be my year of helping. I want to help you promote the program and the great work that you do. I have asked for, and been given the permission by Zareinu, to be the representative for the school and do my best to help you in any way I can.

There is an African proverb that says: “It takes a village to raise a child”. I want to thank you for being part of my village.

Thanks to Jake's Dad for the video

2008-04-25T20:11:00.000-07:00

Parents seek cure for child’s rare genetic disorder
By MARCIE SOMERS, Special to The CJN
Thursday, 24 April 2008
TORONTO — When Jacob Trossman was born, his parents immediately knew that something was wrong. When he emerged from his mother’s womb, he was grey and his chest caved in whenever he breathed. Marcy White and her son Jacob Trossman Jacob’s cries didn’t sound like a normal baby; instead, they resembled the braying of a donkey. And his eyes twitched uncontrollably. It became clear within a few days after Jacob’s birth that he would not have an ordinary life. “The one thing that stands out clearly in my mind is hearing somebody say, ‘I’ve never seen this before,’” his mother, Marcy White, says. For the first 10 months of his life, Jacob saw more than 20 specialists, who put him through many tests. He couldn’t eat, had poor muscle control and paralyzed vocal chords. Eventually, doctors told White and her husband, Andrew Trossman, that a diagnosis might never be made. This was unacceptable to White and Trossman, who embarked on a journey that would take them on a similar path of the parents in the Oscar-nominated movie Lorenzo’s Oil – a film based on the true story of a boy who has a disease that is so rare that no one is working on a cure, so his parents vow to find one themselves. White and Trossman spent hours on the Internet and at the library trying to figure out what Jacob had, and they talked to many experts. White began reading medical textbooks. She jokingly refers to that time as her PhD in Jacob. After months of research, they finally had a breakthrough. White was going through her family’s medical history when she noticed that her mother’s brothers died before their second birthdays, and she noticed the similarities between her deceased uncles and her son. “They had the same symptoms – paralyzed vocal chords, breathing and reflux problems and the inability to keep food down,” White says. She also discovered that her mother’s cousin in Israel had a son with the same symptoms as Jacob. At the time she came across those records, White was scheduled to meet with a genetic counsellor and a doctor who specializes in metabolic genetics. Armed with the new information, the doctors took another set of tests, and White and Trossman finally had their answer. Jacob had Pelizaeus-Merzbacher disease (PMD), a rare genetic disorder. The disease is caused by the lack of myelin – a fatty covering that acts as an insulator on nerve fibres in the brain. PMD is degenerative, and there is no treatment or cure. Typically, people born with the disease have 15 to 20 years to live. Worldwide, it affects one in 500,000, mainly boys. Jacob is one of four known Canadians with PMD. It’s fitting that the slogan for PMD is “it’s rare, but it’s everywhere.” Now that White and Trossman knew what Jacob had, they hit the books to find a cure. They travelled to medical conferences, met with dozens of specialists and even visited Germany in search of answers. Sadly, they were unable to get one. Refusing to give up, in 2004, White heard about an experimental drug that acts as a myelin sheath replacement that was being tested for patients with spinal injuries but wasn’t considered for PMD patients. White and Trossman thought that it might help Jacob and were able to enlist the help of Dr. Jim Garbern from Wayne State University in Detroit. They managed to convince him to test the drug on mice with a genetic disorder similar to PMD. At first the results looked promising, but once again, they were faced with bad news. “Initially, the results looked great, but in the end they didn’t end up being statistically significant,” White says. Unfortunately for White and her husband, this meant that without the proper results, it was going to be nearly impossible for them to get doctors in Canada to continue with the research. “It’s incredibly difficult to get doctor support to conduct research… We were hoping if Dr. Garben’s research showed positive results, we could get doctors in Canada to further his work. Now with the negative result, it makes it even more challenging to find someone to do PMD research here,” she says. “But we haven’t given up,” she adds. She continues to search for a cure and is in touch with doctors in the United States and Europe. Although there is some interest by the research community, there is no sense of urgency. “It’s not the same as being a parent watching your child slowly decline – Jacob is a ticking time bomb,” she says. As White puts it, “if we don’t do it, no one will.” For more information or to contact Marcy White, visit www.curepmd.com.

Inspiration from an unlikely source

2008-04-02T06:08:00.000-07:00

Facts & Arguments: THE ESSAY
Inspiration from an unlikely source
How could a teenage girl be comfortable taking care of my disabled son when most adults were too afraid?
MARCY WHITE
submissions: facts@globeandmail.com
April 1, 2008
It is so easy to find negative things to say about today's teenagers. I seldom hear about those who devote their spare time to activities that don't include shopping, movies and video games.
But I have been fortunate to have met several amazing unsung teenagers who are worthy of admiration.
Last year, I heard about a program on Sunday mornings for kids with special needs. It was run out of a local high school and led by a pair of 16-year-old girls.
I was skeptical at first. How could a teenage girl be comfortable taking care of my son, and other kids like him, when most adults were too afraid to be alone with him?
Even after I spoke to the girls, who assured me they were willing to learn how to set up Jacob's feeding pump, I was hesitant.
My five-year-old son has Pelizaeus-Merzbacher disease (PMD), a rare, degenerative disorder that affects his central nervous system. Although he understands almost everything, he cannot sit independently, cannot talk, has difficulty breathing and is fed through a tube inserted into his stomach.
Jacob requires constant assistance and cannot be left alone, even while sleeping, as he is constantly at risk for choking. Even after learning this, the girls reiterated their desire to have Jacob join the group.
Some people thought I was crazy: How could I, a responsible parent of a severely disabled child, entrust his care for two-and-a-half hours each week to a group of kids? What if he choked? What if he wouldn't stop screaming? Were they strong enough to lift him?
I had so many doubts but decided to try. I loved the idea that Jacob could spend time with other kids (albeit older than him, but not nurses or other medical staff) and he enjoys his time at school, so being away from his parents was not a new experience.
Just as they had demonstrated in our first conversation, the girls welcomed Jacob into the group with such warmth that my doubts started to fade. Week after week, they became more familiar with him and vice versa. The counsellors continued to amaze me with the activities they planned, the efforts they made to ensure that everyone participated to the best of their abilities and their utter devotion to these special children.
Each child has various challenges. Some are physical, where the kids cannot move independently; some are cognitive, where the children cannot speak; and some are a combination of both. The one thing all these kids share is a need to be surrounded by people who can help them experience things most able-bodied children do by themselves - turn the pages of a storybook, stir the cookie batter or sing a song.
One week, partway into the session, I was told the girls had organized an outing to Chuck E. Cheese's. They had arranged for "older girls with driver's licences" to help them transport the participants and their equipment on this outing.
Two things went through my mind: "Wow, these girls are incredible; it sounds like a great experience," and, "Am I nuts? Am I really going to let them take my son on this adventure without a responsible adult present?"
Although I debated following them and watching from a distance, I decided to send Jacob off with his buddies and made sure the counsellors had my cellphone number and two backup contacts. Several hours later, they returned with huge smiles and pictures that captured the experience. This was my turning point. The doubts I had harboured faded - I would never again think twice about having my son participate.
When the summer came and the girls headed off to work at overnight camps, I wasn't sure who was sadder: Jacob for not seeing "his" Bracha, Bracha for not playing with her "best boy," or me for not seeing the smiles on the faces of Jacob, Bracha and the other counsellors each week.
During the summer months, we couldn't wait for the program to start again. Neither could Bracha. On her request, she came over to our house several times to play with Jacob. Needless to say, he welcomed his old friend with huge smiles.
I've spoken to these girls several times, sharing my gratitude for allowing us to take part in this wonderful program. One girl recounted a conversation she had had with her older sister, who said she could not envision herself participating because when she looked at these kids, all she saw were their challenges and troubles. It was too sad to be around them. The counsellor told her sister that when she looked at the kids, she saw children who loved to play and she did not notice their diseases.
When people sigh and complain about the attitudes and behaviours of teenagers today, I know they have not met this group of girls. The love, respect and interest that they show Jacob and his peers is nothing short of remarkable.
If I can raise my three-year-old twin daughters to be as caring and generous as these girls, I know I will have done something right. They are my inspiration.
Marcy White lives in Toronto

It's finally out!

2008-02-28T18:14:00.000-08:00

It's been loose for months. We've wiggled it every morning for weeks. We've shown it to everyone around. Jacob's front tooth fell out tonight. And it couldn't have been timed any better! Around dinner time, Bracha called unexpectedly to see if she could stop by for a quick visit with Jakey. As we were finishing our supper, I heard someone call me from upstairs. It wasn't one of those panicky calls, but there was something in the voice that made me head up to check it out. Sure enough, there was Jacob, in Bracha's arm, with her other hand using a kleenex to dab at his mouth, his tooth in her hand. While we were very excited, Jacob had the strangest expression on his face; it looked like he didn't know how to react - should he laugh, should he cry? But the more fuss we made, the more he seemed to enjoy his new source of attention. And to make it an even bigger deal, this happened when his Bubby and Grandpa were over for dinner.

What is ok to ask?

2008-01-28T20:25:00.000-08:00

People often ask how Jacob is doing and I'm not really sure how to answer them. Should I simply say "he's doing well, thanks for asking" or should I tell the truth, which might make them a bit uncomfortable? I believe most people really want to know how he is and truly hope I have some great, or at the very least, good news to report. Sometimes when I give some detail as to what we've been going through lately, the 'asker' gets very uncomfortable and there is an awkward pause because the response wasn't what was expected.

For those of you who are unsure of what is ok to ask, you should know that both Andrew and I welcome your questions and interest. There is very little about Jacob's care and illness that we don't discuss. If you are curious and want to share in his life, then thank you for your concern and please, ask how he's doing. Most of the time you'll get the current status, it's too tiring to try to hide the details.

Without going into too much detail (only because that's not the point of this entry), Jacob has been having a rough time lately. We're not sure what's going on but we're in the process of investigating a few avenues and hope we can get to the bottom of it soon.

To our friends, thank you for taking the time and interest in our son and his progress. We truly appreciate your involvement.

Brief update

2007-10-28T19:24:00.000-07:00

Well, it's been a long time since we've posted an update on Jacob. He had a great summer, (with the exception of low-grade fevers almost every week and a quick trip to the ER for an ankle xray) and school is off to a good start. And he's lost his second tooth, with a third one wanting out too!

During the last 2 weeks of summer, Jacob attended Camp Robin Hood with his best pal Kelly by his side. It was there he met Taryn who quickly decided Jacob was her #1 best friend. After a few short days she changed her mind and Jake became her boyfriend. As you can see by the picture, they make an adorable couple! They had their, according to Taryn, "first date" in September when they drank some milk together (Taryn from a cup, Jake through his tube). Taryn is an amazing little girl who loves playing with Jacob and does a great job of making him smile.

Jacob lost his first tooth!

2007-07-21T10:13:00.000-07:00

It was loose since his birthday, and on Thursday night (July 18), Jacob's loose tooth fell out! He was showing his 'Poppy' how he can wiggle his tooth with his finger (with mom's help) and the next thing we knew, the tooth was out. Jacob was so excited, and a bit surprised with the hole it left behind. When he moves his tongue to the spot where his tooth was, he gets a funny look on his face as if to say "something feels different here".

Jake Turns Five

2007-06-19T19:38:00.001-07:00

As a quick update from my last post Jacob has been doing much better. It seems the botox made an improvement and he's been in less pain. It does seem to be wearing off, but it is effective. It's been tough to really guage things lately because of Jacob's behavior. He seems to get mad at Marcy and me and will scream sometimes for hours on end. He doesn't do this at school or even with Gina, his nanny since he was first born. However, other part time care givers aren't so lucky. A very sweet PSW has been working with him one afternoon a week for a couple months. But as soon as he sees her, he starts up and doesn't stop till he goes to bed.
So was it pain that was bothering him? Was it behavioral? Since a little advil made such a difference, I believe pain was definitely playing a role. However, it's equally clear to me that he's giving us a piece of his mind. It hurts watching him when he's so miserable and angry.

Meanwhile, he just had his fifth birthday which has been a critical milestone in our minds for several years. Typically, a childs brain develops during the first five years. We also found that Jacob has been developing, albeit slower than other children. Our theory is that his brain has been developing faster than the disease has been progressing and that's why we've been seeing steady progression. In our minds, we gave ourselves a target of his fifth birthday to get some treatment into him while his brain is still developing. This would allow him to develop his brain as much as possible to set him up for the rest of his life.

Sadly, although we first got wind of the experimental drug we're working with three years ago, we failed to meet our target. We failed Jacob. We have loads of excuses, mostly because we rely on so many others that we cannot control. In fact many of those doctors, researchers, etc. probably also have loads of excuses why they were too busy to make a phone call, or read an email, etc. These excuses will not buy Jacob any increased brain development and are therefore completely irelevant. We failed Jacob.

We need an Ontario MD to help. We want to develop a safe protocol so that we can start Jacob on this drug. We'd like to be able to do this in hospital to mitigate the risks associated with potential unexpected side effects. We're not wreckless here. We've done research into the disease, the drug, and we even funded a scientific study to experiment with the drug in animal models of Jacob's disease. Right now, given the current state of PMD related research, this drug is Jacob's best chance for improved quality of life.

Having said that, we're cautious about the risks and we're open to disprove our theory if it's in Jacob's interest. However, vascilation is unacceptable.

How do you get this done in Canada? Money is not the answer. What's the problem? CYA. Nobody is accountable to help kids like Jacob. On the other hand, they're all afraid he might get worse. And that is all the rationalization any of them need to sleep sound at night. If only they had to spend one night at our house.

Speech given by Marcy at Zareinu Golf Tournament May 29,2007

2007-05-30T06:30:00.000-07:00

Like most parents, I love talking about my children so when Randy asked if I’d speak to you about my son, I welcomed the opportunity.

My son, Jacob, is an adorable 5 year old with a great sense of humor. Like most boys his age, he loves the rides at Canada’s Wonderland and funny noises.

Unlike most kids, Jacob can’t sit by himself; he can’t walk, can’t eat and can’t speak. But when he’s with his teachers and therapists at school, the only focus is on what he can do and what his latest achievements have been.

The first few years of Jacob’s life are like very blurry images in my mind. It was a very difficult time, especially when we didn’t know what was wrong with him. One of the clearest memories I have of that time was walking into Zareinu for the first time. I came to check out the Infant Intervention Program to see whether it would be appropriate for Jacob. This stands out, in my mind, as one of the most difficult things I have ever done. The staff could not have been warmer or more welcoming but all I could focus on were the wheelchairs and funny-looking equipment in the hallways. I remember not wanting to stay. I also remember realizing that Jacob needed to come and benefit from what they were offering.

Jacob started coming to Zareinu when he was 16 months old. Because he has a weak immune system, we were worried that his exposure to other kids would be very dangerous for him. Ellen understood this and set aside toys that were for Jacob’s exclusive use while he was in the program.

Jacob graduated from the infant program and moved into the nursery classroom where he has been for the past 3 years. Jacob gets so much love, attention and therapy, more than I could describe. His teachers joke that he should have a pager because he spends so much time out of the classroom, either having 1:1 therapy or zooming around the halls in his powerwheelchair and walker.

The African proverb “it takes a village to raise a child” is so true for us. The staff at Zareinu have become part of our family. They share our joy at Jacob’s accomplishments, worry with us when he is sick, and for the past 2 years, celebrate his birthdays with us at our home.

Jacob is an inspiration to so many around him. He works harder in a day than most people do in a week, and he never gets frustrated. He tries so hard and gets really excited when he masters a task. Jacob gets the opportunity to learn, interact with other kids and staff and really thrive at school.

When I pick him up at the end of the day, I don’t notice the wheelchairs in the hall anymore. I only notice the big smile on my son’s face.

Pain

2007-04-18T17:04:00.000-07:00

How do you know when your child is in pain? Well, maybe we're not the swiftest because it took us several weeks to figure out that Jacob was in pain all those difficult evenings. It's a bit embarrassing how many smart people, parents, therapists, doctors, etc. it took to realize that Jacob was in pain due to spasticity.

I guess we knew this day would eventually come, but we hoped that Jacob would be different. We hoped that with all the special therapy, nutrition, and experimental treatment would somehow protect Jacob from the inevitable effects of this degenerative disease. This may be the first lost battle in the race to treat Jacob before the degenerative effects catch up. Clearly, we can't afford to lose any more battles.

On the bright side, we finally got to the local botox clinic yesterday to help relieve Jacob from the pain from spasicity. We've had him on pain medication for the past couple weeks which has certainly helped. In a few days we'll wean him off these meds in hopes that the botox will be enough to do the trick. Jacob got eight shots in his calves. It will take some time to take effect and we may have to do some more muscles to relieve his pain. In any event, it looks like we're back on top of this one.

Time to get back to the bigger picture and get some experimental treatments underway. Next stop, seizures. What will we do? Do we treat him for seizures even though he doesn't have clinical seizures? Looks like we need some more investigation.

Maybe we'll try anti-seizure meds. Maybe we'll get to try the experimental treatment in a hospital. Maybe we'll do both together. Keep your fingers crossed for our little Jacob!

The best smile you've ever seen!

2007-03-19T19:49:00.001-07:00

When Jacob laughs, those around him can't help but laugh too.

Last week, when I came to school to pick him up, one of his teachers came running over to tell me that he said "Evey" as clear as a bell. Evey is a five year old girl who was Jacob's first friend. Apparently Evey was asking him to say her name, even helping him close his lips with her hand like she sees the Speech Therapists do. And he said it. The next day, with some prodding from one of his teachers, he said her name, "Ahuva", also very clearly.

When I hear and see things like that, it reinforces to me how much is going on inside Jacob's head. There are so many things he wants to say and do but has difficulty with the execution. That's why we are trying so hard to find something, some way, to help him express himself, to move and to play the way he wants to, not the way we think he wants.

It's hard to believe that after we've come so far, our biggest hurdle is doctors who are too afraid to help us, too afraid to learn about PMD and not even willing to explore the potential treatment we have waiting for him. We don't expect anyone to be comfortable with trying an experimental drug on a four year old child. In fact, we shouldn't feel comfortable about any child with such a debilitating disease. We're not comfortable at all. But we've done our homework, we are not being reckless. We are more afraid of not doing anything and letting this awful disease progress down its natural course than we are of trying to help our son. Our son, the one with the best laugh you've ever heard and the biggest smile you've ever seen.

Just When You Think We're Getting Close

2007-03-19T17:49:00.000-07:00

Today was another difficult day. Today we found out that Jacob's EEG showed "
epileptiform activity". Not good.

Why did Jacob even have this EEG you ask? That's potentially even more distressing than the finding itself. You see we've been looking for local Canadian doctors to help us put together a protocol to try out this experimental drug on Jacob. One of the local docs asked that we first get a baseline EEG before we meet. We never thought anything bad would show up.

Jacob may be experiencing small seizures which could potentially have a significant impact on his cognitive development. This will also make it harder to get a local doctor to risk helping Jacob with the experimental treatment for fear of triggering amplifying seizures. While there is absolutely no indication that this drug causes seizures, other more widely known drugs such as 4AP, are known to cause seizures.

Obviously, we're very concerned about Jacob especially because he's been having a very difficult time lately. Something has been bothering him for the past two months or so. We're not quite sure what it is, but it seems like he's in pain or uncomfortable. We were even wondering if he's experiencing something called "startle seizures". Perhaps this is what's been making the past couple months so difficult.

We're not going to give up. If we need to treat Jacob with anti-seizure medication, then we'll do it. In fact, there is a theoretical possibility that some anti-seizure meds may help protect the oligodendrocytes from apoptosis which may reduce the severity of Jacob's disease and its progression. There's still so much to do to help Jacob....

After The Rush

2007-03-11T18:30:00.000-07:00

Well, it's a bit more than a week after Nightline aired our story. Jacob is doing much better now that his two ear infections have cleared up. In the past week we've had thousands of hits on our website and many, many very encouraging messages, emails etc. A number of people generously donated to the PMD fund at Jacob's Ladder. Marcy and I have been trying to thank each and every one of you. Thank you for your support and generosity. We will let you know how things proceed with journey to help Jacob and others like him.

In the next couple weeks we hope to get more results from the drug testing. In parallel, we've been trying to find a local doctor that would help go through the process to get compassionate access to the experimental drug. This appears to be another challenging hurdle. Any and all suggestions are welcome! We'll let you know how this progresses.

Jake's Dad

Countdown to Nightline Airing Our Journey

2007-02-26T15:25:00.000-08:00

Today Nightline posted a preview of the week's stories. Click here to see a clip of Marcy and me. Early this morning we put a brief notice out on the news wire, CNN Matthews. Canadian Press will put something out on Wednesday and CBC TV will come to shoot Thursday. What a crazy week to be away on business!

This Drug Might Help

2007-02-24T12:03:00.000-08:00

Last October the first sick mice were given this new drug to see if it helped relieve their symptoms. Unfortunately, there was no significant indication that it helped. At least it did not seem to harm the mice either.

After a while, the research team agreed to try higher dosages of this drug. A week ago we found out that the new dosage showed some obvious improvements in the mice. The researchers video taped several different experiments for us to see. This really was the profound improvement we had dreamed about!

While this is still a very premature conclusion, it's important to get working on the next steps to streamline the overall process. We're not even sure how to navigate the system to get compassionate access to this experimental drug.

Here in Canada, there is something called a "section 8" that we need from the government. It seems we'll need doctors' approval, hospital approval, and various layers of government approval. Anyone who can help us navigate this beaurocracy would be greatly appreciated. We'd especially appreciate help from people with strong ties to Toronto area hospital administration.

Of course, even with approval from the government, we'll still need to get some of the drug from the manufacturer. It's not even clear to me how to convince the pharmaceutical giant to part with this drug while it's still experimental. Again, any advice or contacts would be greatly appreciated.

Jacob will be five years old this May. We first found out about this drug three years ago. It took over a year before we were able to get a research project approved to use this drug. Now we're gated by the speed our mouse colony can reproduce. Please help us take as much time out of the process as possible. Jacob needs this to work.

Nightline Interview

2007-02-22T19:02:00.000-08:00

Just a few days before Nightline was scheduled to come interview Marcy and me we received incredible news from our research team at Wayne State. The drug we're testing appears to have a noticeable effect on the sick mice! Before long we managed to download several video clips of our dear little mice. Of course Ethan, our Nightline producer, was thrilled to get this news as he'd already planned to air our story.

On Wednesday a local camera crew showed up at our house and transformed our family room into a television studio ready for John Donvan to fly in for an interview. John was a very warm, interested and compassionate interviewer who spent a few hours with us discussing our lives since Jacob was born.

After the interview along with the camera crew, TV producer, Nightline correspondant John Donvan, we headed to Zareinu to film Jacob at school.

This was a big day for all of us.....