Research shows that parents and caregivers of medically fragile children often experience depression, anxiety, sleep disturbances, financial challenges, as well as social isolation. The burden of chronic stress also heightens their odds of premature death.

Liv Mendelsohn, executive director at the Canadian Centre for Caregiving Excellence , described just how difficult and disorienting the transition process can feel for patients and their caregivers.

“Families often dread the transition from child services and care to the adult system, and many refer to this process as ‘falling off the cliff,’” she says.

For Marcy White, the medical transition represents just one facet of the ongoing, multifaceted struggle in caring for her complex child. According to her, a major and daunting challenge for parents in her position is not only managing the medical aspects of care, but also ensuring that the nurses who care for their child are competent and properly trained.