A Mother Who Imagines Past a Son’s Limitations

From Jewish Tribune APRIL 28, 2014

Marcy White and her husband Andrew Trossman were happily awaiting the arrival of their first child in 2002. But when Jacob was born, their lives turned upside down.

Jacob was born with paralyzed vocal cords and spent three months in the hospital. At 10 months he was diagnosed with Pelizaeus-Merzbacher Disease (PMD) a rare genetic degenerative neurological disorder. Doctors predicted that Jacob would never be able to speak, learn, or understand what was going on around him.

Despite the grim diagnosis, White advocated tirelessly for her son and co-founded Cure PMD to provide education about PMD and to fund research into finding a treatment.

Eleven years later Jacob is able to communicate through a specially adapted iPod attached to his wheelchair. He is a social child who enjoys chair skiing, skating and swimming, despite his feeding tube and 24-hour care. Jacob is also known for his contagious laughter.

“Jacob has an ability to make people fall in love with him,” White said. “There is something intangible that draws people to him.”

Jacob’s story is documented in a new book by White, The Boy Who Can: The Jacob Trossman Story.

“You can say the book is part survival manual and part love story between mother and child,” said White.

The book has received major media coverage in both Canada and the US.

“My twin nine-year-old daughters want to know when it’s their turn to be famous,” she said with a laugh.

Jacob’s intellectual abilities were first recognized when he was six by Devorah Vale, a teacher at Toronto’s Zareinu Educational Centre.

“She was amazing,” White said.

Jacob went on to a regular school, Elkhorn Public School, with the help of two assistants. His favourite subject is French. “His mind is sharp and he’s so aware,” said White. “We read age-appropriate books to him.”

Jacob attends an afterschool Hebrew school and regularly participates in Bais Yaakov’s Yedidus program for special needs children.

“They’ve gone on outings and he’s even slept over at their houses. These girls are incredible,” White said of the Grade 11 and 12 students who run the program. “A lot of them move away to Lakewood and he’s now Uncle Jacob to their kids. We joke that we’re going to need to get him a black hat when he turns 13.”

The fundraising efforts of White and her family have already contributed to two studies for a cure for PMD.

For more information on purchasing the book or donating to the foundation go to: http://curepmd.com.