Over the course of the last few years, Jacob spent over 200 days in hospital. And then, a few weeks ago, our roles were reversed.
Special needs advocate, author
Marcy White BSc, MSW, MBA, enjoyed a career in the investment industry that was sidelined with the birth of her son in 2002. Her academic degrees did not prepare her for caring for Jacob who was born with Pelizaeus-Merzbacher disease (PMD). Since Jacob’s diagnosis at 10-months-old, Marcy has become an advocate for her son and furthering PMD research to help find a cure. Marcy has written many articles about Jacob that have appeared in publications such as the Globe and Mail, Canadian Jewish News and Exceptional Parent. Her first book, The Boy Who Can: The Jacob Trossman Story, chronicles her life as Jacob's mom and the challenges they faced. She co-founded www.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. For more information about PMD visit www.curepmd.com.
It's been almost a year since Jacob last attended school, his immune system too weak to risk exposure to even a simple cold. Nothing with Jacob is ever simple. Life goes on, days stretch into weeks and before I realize it, nine years pass without time away for my husband and I to unwind and relax together.
05/25/2016 10:26 EDT
The past half-year has been hard on all of us, each family member affected in different ways. I can only begin to imagine how uncomfortable and awkward it must be for Jacob to have so many strange caregivers, some with questionable skills, performing intimate tasks including bathing and suctioning.
02/26/2016 02:57 EST
Sharing the obstacles I encounter as an advocate for my son with severe medical issues is done with the hope that people will begin to experience a bit about what I, and many others, deal with on a regular basis. My objective is that if people know and empathize with our tribulations, change will be more likely to occur.
01/21/2016 11:20 EST
Designing Jacob's Halloween costumes is an annual project in our house. One year, we built a drum set around his wheelchair
11/26/2015 12:40 EST
Last year at this time, I was helping Jacob settle in to his new school, working closely with his teacher and the school's Vice-Principal to ensure a smooth transition. This year, instead of arranging Jacob's uneventful passage to grade seven, my energy is focused on ensuring that Jacob remains healthy and strong.
10/27/2015 04:51 EDT
My son, Jacob, was admitted to the hospital on January 23, 2015 for a respiratory infection complicated by Pelizaeus-Merzbacher disease (PMD), a degenerative neurological disorder. He would turn 13 years old on May 15 and his bar mitzvah, the ceremony and celebration commemorating his entry into Jewish adulthood, was supposed to be May 18.
06/27/2015 08:43 EDT
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