Opinion: On Sept. 1, my son will be transitioned to adult care without having a doctor who understands his disease

There is one word I can’t stand. It’s a word that, as the mother of a child who requires complex care, makes me cringe and my stomach clench: Transition.


Transition, as in the termination of all working relationships with the pediatric medical specialists that have cared for my son, Jacob, since his diagnosis. When he was 10 months old, we learned that Jacob had Pelizaeus-Merzbacher disease (PMD) — a rare, progressive, and degenerative central nervous system disorder — and was unlikely to live into his teen years. When he was in the midst of a 236-day hospital stay, his doctors had my husband and I tell Jake’s younger sisters that their brother was unlikely to live until his next birthday. He was 13 at the time.


Transitioning to adult care would feel like “falling off a cliff”

I first heard the “T” word six years ago, during a checkup at Toronto’s SickKids Hospital. The doctor explained that when Jacob turned 18 years old, he would no longer have access to the health-care team he had known. Instead, he would be “transitioned” to the adult health-care system, which would feel, as the doctor put it, “like we were falling off a cliff.”  


We did not anticipate that Jacob would reach his 18


birthday, but as the years passed, with a lot of diligent, non-stop care, and a great deal of strength from the bravest boy I know, it became a real probability. I began investigating what his medical care would look like after his milestone birthday, when despite his size and inability to move independently, he would legally be an adult. 




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