Your Stories: Ontario & Nunavut

The McSpaddens are one of the many families Muscular Dystrophy Canada helped last year. Eric and Jennifer’s son Chance was diagnosed with Duchenne muscular dystrophy as well as autism when he just over three years old. As Jennifer recalls, “We felt so alone. We were drifting in a world without any support.”

Then the couple joined the Hamilton Parent and Child Networking Group, developed and run by Muscular Dystrophy Canada. The group meets once a month to provide support, friendship and information on issues like funding sources, systems, school services, clinics, physiotherapy, nutrition, respite and home care. “It gave us an outlet,” says Jennifer, “somewhere to go where we could speak with other families who were living similar lives to ours.”

It was difficult for The McSpaddens to leave the house without Chance. As Jennifer shares, “Finding care was impossible due to our son’s high needs. He is a wanderer, nonverbal, and incredibly strong and fast! All eyes need to be on him 24/7.”

To assist the family further, the group’s facilitator, services specialist Karen Dunbar, conducted several visits to their home. She helped the couple complete applications for additional support, contacted other service agencies on their behalf, and was there to listen. When Karen learned that Jennifer and Eric hadn’t been out socially since Chance was born, she contacted a local government agency to get them respite care. They initially received 32 hours a month through this program, as well as additional funding through Muscular Dystrophy Canada for some respite care in the evening. This allowed Eric and Jennifer to have a night out a few times a year.

Chance is now five and in school. Still, his parents depend on the six hours of respite care they receive each week. “Without Muscular Dystrophy Canada’s support, I have no doubt we’d be very tired,” says Jennifer. “Their fundraising efforts help fund research and equipment, but just as importantly the organization ensures they have caring people on staff with knowledge and a willingness to listen, support and navigate systems to get the best services for us, the clients. We are so grateful. Thank you!”

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