Sarah wasn’t worried that her son took his time learning to walk and liked to lounge a bit more than other toddlers. But when Connor still preferred soft foods at age three, she took him to a pediatrician. Blood tests showed a muscle enzyme level at 300 times higher than normal. They were referred to ACH where Connor was diagnosed with Duchenne Muscular Dystrophy. Naturally, Sarah and her husband, Miguel, were devastated. There is no cure for DMD – a severe degenerative muscle disease. Average life expectancy is in the mid-20’s. Most kids with DMD are no longer able to walk by age 12. Connor’s parents decided not take a day or second with their son for granted. Sarah began volunteering for everything at his school. She became a “helicopter” mom. Meanwhile, shy Connor became increasingly self-conscious – didn’t want to talk about his illness – and was embarrassed that he differed from other kids.
For two years, he struggled to keep walking. But last summer, at age 12, it was time to transition from a manual wheelchair to a powerchair. That was when his social worker suggested he try the Vi Riddell Independence Camp. Connor was totally against it. Mom expected to him to phone that first day, insisting she come get him. To her surprise, when she picked him up, for the first time in his life, Connor wouldn’t stop talking – in great detail – about his day. Behind her sunglasses, Sarah hid her tears, as he excitedly told her how he’d learned to take the city bus, tried orienteering with kids like him and now had goals for the future. He had a whole new outlook.
The Vi Riddell Independence Camp helped open up a whole new world for Connor. No longer shy about having Duchenne Muscular Dystrophy, he speeds around in his power chair, advocates for himself and hopes to get a job at a movie theatre (free popcorn!) or as a toy designer. His parents say the Camp “gave him a voice” and changed all of their lives.