Testimonials and Stories

“My son is a 14 year old boy with DMD who was diagnosed when he was just one and half. Despite the physical limitations, Mark loves nature and outdoor time. But, we have to closely monitor the steps he takes so that he is not overexerting himself which will result in muscle cramps or even …CONTINUE READING

“We thought our child was going to die a very slow and painful death. Our world ended, and we were never going back to life as we knew it.” Those were Amanda and Brodie’s first thoughts when they learned their son, Ben, was affected by Duchenne muscular dystrophy (DMD). For the first three years of …CONTINUE READING

“I’m happy to report, as of a couple weeks ago, we picked up the keys to our wheelchair accessible van! We’re very much looking forward to making use of the warm weather to have some adventures with our newfound mobility!” “We both really appreciate your assistance and thank you again.” – Alex Carey, BCCONTINUE READING

For many, the birth of a child is an exciting, and joyful event. Freya’s birth was no exception. Born last year, Freya was small, beautiful, and one of the first babies to be screened for spinal muscular atrophy (SMA) in Alberta. In 2020, MDC began work to positively influence policy change, and get SMA included …CONTINUE READING

Christina was twelve years old when she started to experience weakness in her legs. She struggled to get up off the floor and just climbing stairs became very hard. Sometimes, her legs would give out entirely. As an active and energetic youth who was involved in many sports, Christina kept making excuses for her sudden …CONTINUE READING

As a baby, Brody wobbled when he sat unassisted, and struggled to control his legs when pulling himself into a standing position. Kelli, his mom knew something was not quite right. And, at 20 months old, Brody saw his first specialist – the start of a three-year journey in search of his diagnosis. After meeting …CONTINUE READING

At four years old, Elvin had great difficulty walking and fell down frequently. Concerned, his parents took him to a specialist in Toronto, where he was diagnosed with Duchenne muscular dystrophy. The youngest of four children, Elvin relies heavily on his family for support with daily activities including bathing, and going up and down stairs. …CONTINUE READING

For years, Elude complained of pain in his legs that would not go away and after several doctor’s visits, he was diagnosed with oculopharyngeal muscular dystrophy. As his disease progressed, it became increasingly difficult for Elude to complete everyday tasks and his wife, Gaétane stepped in to support. For more than 30 years, Gaétane has …CONTINUE READING

At eight years old, Lucas was diagnosed with centronuclear myopathy (MTM1), which causes severe muscle and lung weakness and greatly affects his mobility. Because of his disorder, Lucas uses a wheelchair, and relies heavily on his family, especially his mom and dad, Sarah and Arnaud, for support with daily activities including personal care and going …CONTINUE READING

When Johnny began experiencing weakness and muscle deterioration, he brushed it off as a sign of aging. As an athlete, who enjoyed running and golfed regularly, being diagnosed with Limb-Girdle muscular dystrophy in his late 40’s was life changing for him and his wife, Carla. At first, Johnny’s biggest issue was climbing stairs, until his …CONTINUE READING