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(Age 11)


June 8th is a day we will never forget, the day the doctors told us our oldest son William has Duchenne muscular dystrophy. At the time we only knew a bit about Muscular Dystrophy, and only first heard about Duchenne from a doctor a few weeks earlier.

It was William’s kindergarten teacher that told us we should talk to our family doctor because she noticed how William had to brace himself to get off the ground. We just thought our son was developing slower than normal and because he was our first child, we never suspected anything was wrong. We never thought he had a rare genetic disorder that would change our lives forever.

Internet searching revealed the changes and challenges that our family would face, but the internet also allowed us to connect with Defeat Duchenne Canada and other families in the same situation.

At that doctor appointment it was impossible to hold back the tears in front of William. As a parent you have this ideal life pictured for your kids and that changed in an instant.

We are starting to see William progress more as he is growing and at the same time his muscles are getting weaker. Now he needs help getting up when just a year ago he was able to do this himself. He was once able to walk around the block, but now only gets a few houses down the street.

Our family outlook is to take it one day at a time. Because every child affected by DMD has a different future, we try to travel (when we could) as much as possible. We have travelled within Ontario, Quebec and the Maritimes enjoying nature and visiting museums. We have also taken William to visit his uncle in Switzerland to see mountains, castles and chocolate factories.

William’s doctors recommend that he exercise, stretch and eat healthily even though William would rather play video games and eat chocolate. Daily stretching can be a chore but it has become our new normal.

Because of grants from charities like Defeat Duchenne Canada there is a lot more ongoing research into possible treatments and therapies. Children with DMD are now living longer than ever because of improved knowledge and transformational science. But, there is still a lot of work to be done because only a few treatments have been approved (in the United States) and they only target a few specific genetic mutations. Every donation to Defeat Duchenne Canada gets us one step closer to finding a cure for Duchenne muscular dystrophy.

Thank you for helping us defeat Duchenne,
Ryan Anderson (William’s dad)