Parenting a child with a rare disease: Interview with Marcy White

Marcy White BSc, MSW, MBA, enjoyed a career in the investment industry that was sidelined after the birth of her son in 2002. Her academic degrees did not prepare her for the task of caring for Jacob, who was born with Pelizaeus-Merzbacher disease (PMD). This rare, degenerative genetic disorder affects the central nervous system and impacts coordination, motor abilities and intellectual functions. Since Jacob’s diagnosis at 10 months old, Marcy has become an advocate for her son and PMD research. Marcy recently published her first book, The Boy Who Can: The Jacob Trossman Story, and has written many articles about Jacob that have appeared in publications such as the Globe and Mail, Canadian Jewish News and Exceptional Parent. She co-founded curepmd.com to educate people about PMD and fund research into finding a treatment. Marcy lives in Toronto with her husband, Andrew, and their three children, Jacob, Sierra and Jamie.

Tell us a little bit about Jacob.

Jacob is 12. He has a rare, neurodegenerative disease called Pelizaeus-Merzbacher disease (PMD). There is a lot Jacob doesn’t have—he doesn’t have the use of his legs, his arms, or his voice, but he hasn’t let it stop him or slow him down.

He loves to swim; he has freedom in the water that he doesn't have in his wheelchair. A couple of years ago, some university film students made a documentary about Jake's swimming prowess. He enjoys hanging out with his friends—he's a very social boy and loves being around other kids his age. One friend, Kaylum, told his father about Jacob and how they play together. When the father met my son, he was caught off-guard. Kaylum hadn't mentioned that Jacob was in a wheelchair; it wasn't something that struck him as important. Jacob also loves his pets. He has two cats, Spot and Spot's Brother, and last year Jacob got a skilled companion dog named Felix who spends a lot of time by his side.

Who is the target audience for your book?

I realized that I learn important, practical and relevant things from other parents. They are my best source of information, as they have traveled this road before me. Whether it's an everyday concern as it relates to my daughters—such as a good way to get them to eat more vegetables, or something more obscure such as which positions are most comfortable for a child with severe scoliosis—they are a great resource. I wrote The Boy Who Can: The Jacob Trossman Story with the desire that other parents facing challenging situations can gain hope and strength and know they are not alone.

Today, many people have children or siblings with special needs. Even more people have cousins, friends or colleagues with children who have special needs. I wrote the book for these people to get a glimpse into what our lives are really like. And more importantly, I wanted to show how they can still maintain their friendships with families like mine despite our dramatically different lives. Finally, I would love for medical professionals, caregivers, educators and policy-makers to fully comprehend what raising a child with special needs entails. Despite their best intentions, there is so much more to our lives than the small window that they see at the hospital, clinic or classroom. I want them to know that their action or inaction can have a real impact on us.

In your book you talk about the contrast of thinking paint colours were important to realizing they were arbitrary because of what you went through. I felt the same with everything that happened with Syona and related to that emotion. I'm curious about how this realization makes you feel?

When I first realized how much importance I once placed on something like paint colours I thought about how innocent I was—before I knew what really hard decisions were. The adult in me knows that these trivial "problems" are simply things that must get done eventually. But part of me wants to go back to that carefree time, when my biggest decisions involved whether the furniture in Jake's room should be white or natural wood colour, and not whether to subject my son to painful surgery in order to put his dislocated hip back into its socket.

You talk about how you realized you “had unwittingly given your son a horrible disease" after you were informed that the gene responsible for PMD is carried by the mother. This brought me back to my own experience of reading reports that described what had happened with my body and how it had impacted Syona. How did it make you feel?

I will never forget the moment in the doctor's office when I realized I had unwittingly given my son a horrible disease. Even now, almost 11 years later, the memory still causes my stomach to flip. The room was silent, my mind was reeling but everything around me felt frozen in time. I exhaled—I must have been holding my breath and my heart was pounding quickly in my chest. I spoke out loud the conclusion that everyone else in the room had drawn: I was the cause of Jacob's medical struggles.

You talk about how you resolved things with the school board. With the challenges so many parents have with the school system I would love to know how did you came to a resolution?

Without a doubt, the fight to get Jacob into a "regular" school was the toughest and most emotionally draining experience of my life. I was persistent and relentless in my quest to get Jacob the education I thought he deserved. I knew unequivocally that the school in question was the best place for him so I did not stop until I was able to make it happen. And it was worth it.

How do you cope with tough days?

Jacob needs 24-hour care, which is exhausting. His care also requires an immense amount of planning in terms of who will be with him, preparing his food and medication, ensuring he has all the supplies he needs. I have twin nine-year-old daughters who need me too—they are typically developing, inquisitive and very active. I constantly feel like someone isn't getting enough of my attention. I feel like I live on a tightrope and any wrong move can bring our whole world into chaos. For example, if a nurse gets sick and can't come for her shift, or if Jacob gets sick and can't leave the house, these situations where something suddenly upsets the delicate balance can have ripple effects that can throw everything off for days.

There were many, many times when I said "I can't do this" but as Jacob got older and I settled into my new normal I realized that I can do this. There are still times when I think I can't keep going but these thoughts come less frequently. I know that I can and I will keep going.

What are your future hopes for Jacob and your family?

As a parent, we want our kids to be healthy and happy. Jacob is as healthy as he can be and is very happy. He has the most amazing laugh and we hear it several times a day. He has a great sense of humour and has a section on his communication device (he uses a specially adapted iPod and a switch positioned near his cheek to communicate) that is filled with jokes. One of his favourite jokes is "where does a pirate go to the bathroom? On the poop deck." I think many 11-year-old boys would enjoy that one, too.

The Boy Who Can: The Jacob Trossman Story is available at www.theboywhocan.com and in print or e-book at major online retailers including Amazon, Indigo and Apple. All proceeds go to the care and support of Jacob Trossman.

Marcy is also available to speak at meetings, conferences and book clubs on any topic related to her experience with Jacob. You can contact her through www.curepmd.com. If you’re in the Toronto area on May 28th feel free to stop by Marcy’s book signing event.

Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.