Reclaim the day

Stand for Duchenne Canada is happy to announce the Reclaim the Day initiative, to help raise awareness of Duchenne Muscular Dystrophy (DMD).

Many Duchenne families will never forget the day their children were diagnosed. The feeling of shock, panic, and helplessness is only a fraction of the emotions that we all experienced that day.  We want to “Reclaim the Day” and remind families and our communities how fortunate we are to have such special children in our lives. We also want to give a day back to our kids that is not about Duchenne but about them and what makes them so special.

How this will work: Stand for Duchenne will select a Duchenne child and invite them to “Reclaim the Day”. This will be a community event that will take place in their hometown that will celebrate a joyful activity of their choice. This could include events like a concert featuring your own band, an art exhibit featuring your work as a photographer or artist or even a video gaming party.

We’re calling all interested Duchenne families in Canada to submit a 350-word (maximum) essay describing their day of diagnosis and how they would like to reclaim their day.  Please submit your entry by Sunday, October 21st, 2018, at 9:00 PM EST.  Click here to submit.

The chosen submission will most effectively demonstrate how their chosen activity will “Reclaim the Day”, giving them strength, hope and resilience, ultimately reframing their day of diagnosis. Stand for Duchenne will help plan a full day around your activity and the things you love and a few special surprises, to make it full of happiness and joy to help you reclaim the day.

Need some inspiration?  Here is an example that Nicola Worsfold put together which might help

For our son, Owen, the day of his diagnosis was just a normal day. The diagnosis only affirmed what he was experiencing every day of his life. While I mourn for the life he could have had, he continues on the path he has always been on. You see Owen is a bright, loving, kind, video gaming, aspiring chef with a great sense of humour. Nothing has changed for him, it is everyone and everything around him, family, friends, school, house, hospitals all of which have adapted to suit his needs. Owen dreams of running his own restaurant one day, he loves to bring pleasure through his taste buds! If Owen could have his day it would be a pop-up restaurant in Toronto, or a food truck feeding his delicious creations to his friends, family, and community, watching their smiles as they devour his food. This would bring joy to our family to see our son achieve his dream that may or may not become a reality for him someday.

Reclaiming the day of diagnosis has a different meaning to Ed and I. We will never forget the day our son was diagnosed with DMD. It started with a suspicion with no real sense of urgency as we were sure our son was ok, just some worrisome issues like clumsiness and tiredness. We thought, maybe he was a lazy kid and not motivated to run as hard to keep up with his friends? Maybe he was just clumsy because he was tall and big for his age? Maybe those large calves are a sign of his future large stature that will no doubt make him a great hockey defenseman or rugby prop one day. Our path took us from our GP to the pediatrician to the neurologist. It was a path full of doubt, denial, hope, and reassurance that this could not possibly be something serious like Duchenne Muscular Dystrophy. It’s a genetic disorder, we have no family history and we have a healthy daughter. Until that day when our worst nightmare unfolded before our eyes and our days of spending endless hours in hospitals and clinics began. We would like to #reclaimtheday by granting a day of joy to another DMD family in Canada, raising awareness and support for our DMD community.

If you have any questions, please do not hesitate to email DMDadvocacy@cohnwolfe.ca or Alyssa Acorn (alyssa.acorn@cohnwolfe.ca or 647-259-3304).