Toronto family worries their son aging out of pediatric care will be like 'falling off a cliff'

For the past 21 years, Marcy White has been fighting to keep her son Jacob Trossman alive — and that fight recently got a lot harder.

Jacob has Pelizaeus-Merzbacher Disease (PMD), an ultra-rare degenerative disease attacking the central nervous system. It affects an estimated one in 200,000 to one in 500,000 kids — mostly boys. There's no cure and no standard course of treatment.

At age 12, he became a patient in the Complex Care Program at Toronto's SickKids hospital. It streamlines appointments that offer quick access to a long list of providers who function together as Jacob's team, including general medicine, neurology, respirology and more.

But now, at 21, Jacob's aged out of pediatric care.

He's not the only one; as advances in pediatric care mean minors with complex medical needs are living longer, healthier lives — it also means more of them are aging out of the very system designed to care for them.

SickKids says their services can be adequately replaced by specialists in the adult-care system. But White is worried the so-called transition will be akin to her son's care "falling off a cliff."

So she's filed a human rights complaint, pleading to allow Jacob to continue receiving care at SickKids.

"I want Jacob to be seen as a person first and not simply as a body in a wheelchair," White told White Coat, Black Art's Dr. Brian Goldman.

Jacob has never been able to walk or talk. PMD attacks a slew of brain and bodily functions and requires a group of specialists to manage a long list of symptoms.

Anna Tan, one of Jacob's nurses, spends hours a day suctioning his airways because his vocal cords are paralyzed; a couple of teaspoons of liquid can cause him to choke. He needs eyes on him at all times, in case he stops breathing.

As the years have gone on, Jacob's symptoms have become increasingly life-threatening.

"A couple weeks ago, he was having some episodes of what looked like seizures that were new to me because in my nine years I didn't really see him have those," Tan told Goldman during a visit to White and Trossman's home in north central Toronto.

As of Sept. 11 this year, SickKids no longer cares for Jacob. Normally, minors age out of pediatric care at 18. Jacob continued to qualify until 21, due to the pandemic and other factors. But due to the pandemic and other factors, Jacob's transition out of complex care was delayed.

Where once nearly all his needs could be met by a co-ordinated team at SickKids, the hospital's final transition plan for Jacob encompasses specialists at five different hospitals spread out over the Greater Toronto Area.