We introduce our Web short documentary series, “Portrait of Duchenne.” What’s it like to live with DMD? As a parent, to face the reality that your child has a fatal disease? As a person with DMD, to face an inevitable, premature death? As a sibling, relative or friend, to face mourning your loss?
The journey is beyond words.
Through our series, the DMD community and people beyond our community will feel this very painful experience. We meet five Canadian families who are taking on the challenges of raising money and leading the way for access to new treatments. Today, more than ever, it’s time to share their stories. New treatments are on the horizon, and families need to be heard to advocate for ways to access them quickly.
This is the story of John Davidson going the distance for his son Jesse and ends up raising millions for new research.
Going the distance to raise millions
Sherene Davidson: “When we first started, there was barely anything to fund because there just was nothing out there that people were doing.”
In 1986, the Davidson family learned their son Jesse had Duchenne muscular dystrophy (DMD). They had never heard the expression before. The diagnosis literally flipped their world upside down. They knew little about science and research, but they figured quickly it was their only hope. When Jesse got to an age where his mother, Sherene, had to do the lifting because he was losing mobility, John switched from golfing to walking to stay in shape so he could spend more time with his family. His walks were getting longer and longer, so an idea came to him. Maybe he could walk across Ontario with Jesse, shake some hands, raise funds and get people talking about DMD. He did! The walk across Ontario was so successful that he decided soon after that to walk across Canada solo. The sum of these two challenges leads to the rise an organization called “Jesse’s Journey.” In the course of the past twenty years, John Davidson and Jesse’s Journey have raised over 9 million dollars.
Quotes from the video
The shock of diagnosis
John Davidson: “I think when it comes to the diagnosis, no one is prepared. And your world literally flips upside. First, you cry. And then, you have a period of wonderment. Why us and what did we do wrong? And have a period of guilt. And then, you just go to a very quiet and dark period. “
A 3,339-km trek across Ontario
John Davidson:“I asked Jesse what he thought about that, I took him out for lunch on his birthday. And he looked at me and he said: “Are you nuts?” And I said: ” Well, yes I am Jesse. Just a little bit.”
Sherene Davidson: “I did think it was very magical, the trip that Jesse had. It was something he’d remember all his life. And the disease itself limited him in so many ways and it was just wonderful that he had that experience that was not limited to. “
Walking 8,300 km across Canada
John Davidson: “I never though of quitting with the exception of one day when I had called home and Jesse wasn’t well. And I remember I was in Saskatchewan, I remember stepping out of the road down that morning and it was like -28.”
John Davidson: “You always think yes, you’ll be prepared, because in some dark recess of your heart you’ve kind have always known that this might be the outcome. You never talked about it really but you thought that maybe we wouldn’t win in the long run. Is Duchenne thing? Absolutely. But in terms of my life, it may well have been the thing that made me.”
Join the fight!
Duchenne muscular dystrophy (DMD) is a rare disease with no cure. Orphan drugs that target its causes are being developed now. But we need your help. Research is the only hope. And research needs funding. For the past 20 years, Canadian families, like the Davidson, have been raising funds for research and awareness of DMD. Their actions and successes have funded current research. Now that new treatments are emerging, families need to unite and be heard in order to access new treatments quickly.
Bruce Babington, our own La Force athlete, will cycle across Canada in July 2018 to raise funds and awareness for DMD. Our part is to tell their story.
Sharing these stories is one step forward towards the cure.
- We invite you to share this story with your community.
- Encourage Bruce’s challenge: to cycle from Quebec to British Columbia in 24 days!
- Make a donation to our organization, so we can continue to help get closer to treatment. Make a donation
For more information:
About John Davidson organization Jesse’s Journey