2019 Holly’s Story

Holly is a single mother of two, Ezra who is 13 and Emily who is 17. Emily is a complex kid with multiple health and developmental challenges including Down Syndrome, autism, Chrohn’s disease, a seizure disorder and recently developed osteoporosis. Emily is reliant on a feeding tube and since she was born Holly has been her round-the-clock caregiver. Unable to return to work, Holly receives social assistance.

“I don’t know if people fully appreciate what caring for a complex kid entails,” Holly explained. “There’s so much that’s unpredictable. A trip to the hospital for a test can easily turn into a multi-week stay — there’s no way an employer would accommodate that.”

On top of the family’s regular living expenses, Emily needs special medical equipment, a variety of therapies and must travel monthly to BC Children’s Hospital from the family’s home in Naniamo. While they have been fortunate to receive support from charities to cover some costs, living on social assistant means this family lives in deep poverty.

While Holly is a resilient and effective advocate for her daughter, there are few resources available to support her and Ezra, such as counselling and respite. The families of complex kids are often overwhelmed with care-giving responsibilities and financial worries.

Holly believes that when it’s the best option for the child, family caregivers should be compensated in a similar way to staff in residential care settings.

“I wish the system viewed families more holistically. In the same way my daughter faces barriers, I face barriers to employment. Having a complex needs child should not be a ticket to poverty.”