In 2013, the Sedmihradsky family’s world came crashing down. Their son Max, 2 years old, was diagnosed with Duchenne muscular dystrophy (DMD). The news was devastating, beyond words, for Andrew and Kerri, Max’s parents. DMD is a rare disease, affecting mostly boys (1 in 3,500) and sometimes girls. There is no cure, and this degenerative muscle disease generally leads to a premature death, when young adults with DMD reach their 20’s or 30s. DMD is basically watching your child losing strength day after day.
How to Cope with the Deep Sadness?
A few days after Max’s diagnosis, the family went on a trip to a museum. There, Andrew saw a postcard that read: “Falling down is part of life, getting up is living.” It really resonated with him and sparked the idea for Max’s Big Ride; an annual father and son 600-km journey from Ottawa to Hamilton in a cargo bike to raise funds for research. It’s an ambitious task, but Andrew believes that, if the worst imaginable things are possible, then surely the best “imaginable” things are possible, too.
New Treatments… Difficult to Access
After a couple of years of coming to terms with having DMD in their lives, Andrew and Kerri almost didn’t dare to hope. The fear of disappointment was too much to handle. But they found out about a new treatment and, through Health Canada’s Special Access Program, were able to obtain it after a very stressful process.
It didn’t take long for them to notice an improvement in Max’s abilities. Over the last 5 years, this treatment has helped Max to preserve his strength. It means that he’s been able to walk and play with his friends a little longer. It is not a cure, but now , the family has a small glimmer of hope.
Just a few years ago, there were no treatments for DMD. Now there is one. With each new treatment comes a little more hope that Max will have a brighter future.
But today, this treatment is still not available in Canada. Without a national plan for rare diseases, only 60% of new treatments make it into Canada, and most are approved up to 6 years later than in the USA and Europe. That means, not all children with DMD have access to this treatment. And that isn’t fair.
“Only 60% of treatments for rare diseases make it into Canada, and most are approved up to 6 years later than in the USA and Europe.”
TOGETHER, LET’S TAKE THE FIRST STEP TOWARDS A SOLUTION
After 5 years of Max’s Big Ride – traveling 3,000 km, raising $200,000 for new research and increasing awareness of DMD via national media – the Sedmihradsky family really knows how to move things ahead for children and young adults with DMD. They know that Canada desperately needs a national strategy for rare diseases. They support this first step towards equal access to treatment and supportive care for all.