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

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On September 1, Jacob White's care will move to the adult health system, which his mother Marcy says is ill-equipped to meet his needs.—via healthing_ca sickkids _pmdfoundation patientombuds HuntersHopeFDN raredisorders CdnCaregiving

Marcy White's son Jacob lives with Pelizaeus-Merzbacher disease, a rare degenerative central nervous system disorder. SUPPLIED

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 — a rare, progressive, and degenerative central nervous system disorder — and was unlikely to live into his teen years.

 

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