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Stephanie Paravans story

Author: Kids Come First | Les enfants avant tout

19 August 2021

Stephanie Paravan photo

Stephanie Paravan wants more time to just be a mom to Matthew, her 12-year-old son with complex and serious health issues.

“I spend too much time navigating Matthew through the health-care system,” says Stephanie. “There are lots of programs but too many points of access. Some days I feel like I’m an administrator, not a mom.”

Matthew is a Grade 8 student in Ottawa. Cognitively, he is a typical 12-year-old boy, but he has an autoimmune condition and an undiagnosed neurological condition which result in frequent seizures, loss of mobility and speech, and constant pain. He depends on a wheelchair and communicates using cards, apps and other devices. He is not able to sit up or eat on his own. He receives palliative care.

Matthew frequently needs inpatient care at CHEO and Roger Neilson House. When it’s time to go home, Stephanie gets printed copies of his care plan so she has them in hand to share with Matthew’s home-care providers. Often, she and Matthew are home with the rest of the family before their home-care providers even knows that he has been discharged.

The Kids Come First Health Team’s first-year goals include:

Establish a fully-integrated pediatric home-care program, focused on the needs of patients and families, and connecting care and providers across acute, post-acute, home and community settings.

Kids Come First will help moms and sons like Stephanie and Matthew by integrating home care with hospice and hospital care so that families can focus on each other, not arranging for caregivers.