Bais Yaakov presentation - May 28, 2008

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

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

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!

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?

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.