Max, the four-year-old son of UTM’s Andrew Sedmihradsky and a sufferer of Duchenne muscular dystrophy, will bike 600 kilometres from Ottawa to Hamilton this summer.
Sedmihradsky, the International Education Centre’s global mobility coordinator, will travel along the Trans-Canada Trail with his son in the hopes of raising money for research on this terminal disease that has no known cure.
Max’s Big Ride kicks off on June 21 this summer. The entire trip is expected to end on July 1 after 11 days on the road. Max will lead the ride, sitting comfortably in his foam-padded seat aboard a cargo bike pedalled by his father Andrew.
Sedmihradsky and his family were in Australia when they first learned about Max’s disease. “We received the diagnosis in a series of stages,” says Sedmihradsky. At first, doctors were dismissive of Max’s parents’ claims that their son was unusually unsteady on his feet. The doctors believed that Max was simply growing at his own pace.
In the end, it was Max’s daycare provider who referred them to a specialist. The specialist suggested that Max might have muscular dystrophy. “The doctor said don’t Google it,” says Andrew. “But being the person I am, I was Googling it 25 minutes later, and I went into a state of shock.
“It was probably the worst time of my life,” he adds. “But I think that early on, I knew that I didn’t want to just sit there and do nothing. It’s a very serious disease, and it’s fatal, but sitting back and just kind of waiting for this to happen wasn’t an option. So here I am today.”
As Andrew began researching ways to raise funding for muscular dystrophy, he came across the story of John Davidson, founder of Jesse’s Journey, an organization that funds Duchenne research around the world. Since 1995, Jesse’s Journey has provided more than $6 million towards DMD research. Davidson had pushed his own son Jesse, a DMD sufferer, across Ontario in a wheelchair.
“It kind of just went from there,” says Sedmihradsky. “I reached out and I was hoping to align myself with an already established charity that was doing what I wanted to do. John called me from London, Ontario when I was in Australia, and he was really nice.”
Sedmihradsky’s original idea was to ride across Canada and to camp out overnight throughout the ride. “I realized that it was insane to attempt it with a four-year-old,” he says. “I have to pick distances that are sustainable for me, and especially for Max.”
Currently, Sedmihradsky is training rigorously. “I’ve changed my diet, and I go to the gym every day before work: weights, cardio,” he says. “We tried out the cargo bike for a ride in January, but it was pretty cold, and I didn’t want Max’s first experience to be a horrible one.”
Their plan is to start at 8 a.m. each day, ride for an hour, stop to rest in a park or other area, and continue. “I don’t want to have Max in the cargo bike for like six hours or something,” says Sedmihradksy, whose wife Kerri and his parents will be their support team and will follow the pair in a van.
At first, the request for sponsorship was to friends and family through a simple Facebook post, but it’s since gained the attention of larger sponsors and companies. Max’s Big Ride has received about $15,000 in donations so far. Companies such as QuadLock, GoPro, the Australian company Copyworld, and Tuesday Afternoon Media have given both gear and donations. The cargo bike is being loaned by Urkai European Bicycles, a bike shop in Burlington. “At the moment we’ve been focusing on coverage, because I thought it was important to show that there will be a media presence in order to get sponsors,” says Sedmihradsky.
He’s on the lookout for more corporate sponsors, and possibly finding reduced rates on both hotels and car rental places. “I’m constantly trying to find different hooks to entice sponsors. For example, we’ll be passing through Kawartha Lakes, and there’s a company that makes moose track ice cream, which happens to be Max’s favourite, so I was thinking about possibly a tasting?” he says.
Duchenne muscular dystrophy affects about 1 in 35,00 boys. It is a fatal degenerative disease. DMD sufferers are in wheelchairs by the age of 12. The average life expectancy is just 25 years. However, promising research is taking place in various parts of the world. All proceeds from Max’s Big Ride will go to Jesse’s Journey.
There will also be a kick-off event on April 17 in Burlington.
Max is incredibly excited for the bike ride, probably even more with the promise of ice cream. “Trying to explain what we’re planning to do to a four-year-old is impossible,” says Sedmihradsky. “But he understands that we’re going to be going on a special bike ride, and he loves the bike because he’s right in the front and has the best seat in the house.”
This article has been corrected from the print edition. DMD affects one in 3,500 boys, not one in 35,000. A notice will be printed in the March 30, 2015 issue.