Max's Big Ride

In just over a week, Andrew Sedmihradsky will hit the road with his son, Max, but this father-son trip isn’t a typical summer vacation. The duo will be be riding a Dutch cargo bike on an epic journey to raise awareness and funds to fight Duchenne’s muscular dystrophy, a rare disease that will eventually rob young Max of his mobility and drastically shorten his life. The trip, dubbed Max’s Big Ride, will cover 600 km, following the Trans Canada Trail from the Parliament buildings in Ottawa all the way to Hamilton.

Sedmihradsky, who is the global mobility coordinator with UTM’s International Education Centre, was living in Melbourne, Australia with his wife, Kerri and young son Max, when daycare teacher suggested Max’s lack of coordination might be more serious than typical toddler tumbles. The family received the crushing news that Max had Duchenne’s muscular dystrophy, a degenerative disease that has no cure.

Sedmihradsky became determined to do whatever he could to provide a different outcome for Max, who is now 5. “Right now, he can run, but it’s slow. He can’t jump,” says Sedmihradsky. “He’s active and happy now, but the future is scary. He will gradually lose mobility and strength, probably be in a wheelchair by the time he’s 12.” Steroids can slow the disease, but there is currently no cure for Duchenne’s. The disease prognosis includes an average life expectancy of 20 years.

“The future doesn’t look good, but maybe there’s time to change things.”

“Cycling is something that we already do as a family,” he says. “When I was thinking about what we could do together, this seemed like it would be an adventure, and it would be fun.”

He connected with Burlington cycle shop, Urkai, to find a cargo bike. The bikes, which are commonly used in Holland for transporting children, have a special compartment in the front with safety seat, and can be covered to protect little passengers from the elements. “Max used to sit on a seat behind me, but this cargo bike gives him the best seat in the house,” Sedmihrasky says. “He loved the cargo bike from the minute he got into it.”

It wasn’t long before Max’s Big Ride had a website and a fundraising team and supporters around the globe. The family has had guidance from another family touched by Duchenne’s. Twenty years ago, John Davidson walked across Ontario, pushing his son, Jesse, in a wheelchair. All funds raised by Max’s Ride will go to Davidson’s research foundation, Jesse's Journey.

The project has raised nearly $24,000, and has inspired spin-off fundraisers in Canada and Australia. Sedmihradsky says he is overwhelmed by the support. “I appreciate every single dollar that we get,” he says. “The support has been amazing—old friends are getting in touch and people are supporting us that we didn’t know three months ago,” he says, noting that he’s heard from contacts around the world, including Australia and Italy. “It’s almost hard to keep track of all that’s happening to support our trip.”

Sponsors have stepped up with donatations, including a team van, and proceeds from sales of Kawartha Dairy ice cream cones (Max’s favourite). In April, Max’s Big Ride also won a billboard contest through a GTA radio station, winning advertising spots billboards and digital signs in high-profile locations around Toronto.

“We are blown away by the response from people. It’s been really touching,” Sedmihradsky says. “We hope to keep that going and build momentum.”

In the meantime, Sedmihradsky is working hard to get in shape for the trip, with weight training coaching from Darren Turner and daily time on the stationary bikes at the Recreation, Athletics and Wellness Centre. But it won’t be long until he and Max strap on their helmets and pedal off on their journey

He hopes to spend four to five hours a day on the bike, covering about 55 km each day. His wife, Kerri, and Sedmihradsky's parents will follow the bike in a donated van. Kerri will coordinate social media and other logistics, and entertain Max when he needs a break from the bike.

“I’m hoping it will be an awesome experience for Max and me, and for all of us,” Sedmihradsky says, adding that Max is anxious to get on the road, too. “When I asked him what he was looking forward to, he say he wants to meet new people and find new places to play with his toys.”

The UTM community will be out to cheer for Max when the cycling duo stops at the UTM campus on Tuesday, June 30. Watch the UTM Facebook page for information about the celebration.

The tour leaves from Ottawa on June 21 and will follow the rural Trans Canada Trail though Carlton Place, Sharbot Lake, Peterborough, Uxbridge and Pickering before ending in Hamilton for Canada Day celebrations on July 1.

Supporters can donate directly to Max's Big Ride or contribute to Ice Cream For Max, which will supply Max with his favourite ice cream during the trip. Any money not spent on ice cream will go directly to to Jesse's Journey.

Watch the video for Max’s Big Ride >