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Living with Duchenne muscular dystrophy goes beyond the physical.

There is an enormous emotional impact on not only the person living with Duchenne but the whole family and extended community.

Relationships with your inner circle of friends, family and community are there for you to lean on when needed. But having not lived your experience it may often be difficult to understand or have the same appreciation for what you are going through.

Connecting with other Duchenne families who know what you are dealing with can be a huge comfort. Defeat Duchenne Canada has united families from coast to coast to help you find support, connection, and inspiration in the stories from families who know what you’re going through.

Use the map to read and view Duchenne family stories from across Canada, or scroll through some of our family video stories below.

Share your story, share your rare

Although Duchenne muscular dystrophy is a rare disease, the story of those affected doesn’t have to be –  a story not defined by the disease, but by the connections available and the hope for a cure.

How it Works

You can write about your experience and add photos or a video testimonial. Post in English or French or both!

Who is the Story About?

Choose a family photo to upload.

Thank you for sharing your story with Defeat Duchenne Canada (The Jesse Davidson Foundation)! By submitting this story, you grant Defeat Duchenne Canada permission to use any photos, videos, and statements submitted across all digital and physical marketing and communications assets. You understand that any aspect of this submission may be used in various promotional materials, including but not limited to websites, social media platforms, newsletters, brochures, and presentations. In addition, Defeat Duchenne Canada retains the right not to publish any story based on suitability and our discretion. Please review our Privacy Policy for more information.


Your
Stories

Your words have the power to inspire and transform the lives of those in the fight to defeat Duchenne. Your story is not defined by the disease, but by the connections you make as we journey towards a cure. Your courage in sharing your story is truly inspirational.

Submit your story above to help us continue building our network of families and stand in solidarity as we battle Duchenne.

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The Mitton Family

We are often asked how we hold strength through it all, and our answer is always the same; through the love and support of friends, family and people whose faces we have never met.

The Masnada Family

We still can bike, swim, and ski in some way. We go camping, and we take the kids everywhere. Now is the time to live, to feel joy, and oh, we are! And this is how we go on. We can’t save our son; only the doctors and science can.

The Buntain Family

Henry is our little warrior, and we are so proud of him for being so brave in this fight against Duchenne!
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The Steinke Family

It’s nearly impossible to put into words the sinking feeling you experience upon realizing the ones you love most in the world are getting older without getting any closer to those monumental next steps such as walking, climbing or playing.