Cycling The Great Trail to fight Duchenne muscular dystrophy

How a father’s quest to find a cure for his son’s fatal condition led to a 600-km bike trip along The Great Trail, from Ottawa to Hamilton

When Andrew and Kerri Sedmihradsky learned their 4-year-old son, Max, has Duchenne muscular dystrophy (DMD) – a fatal disease that affects boys almost exclusively – the devastating diagnosis altered their lives forever.

It also propelled them into action.

Andrew says he was inspired by a quote from John Davidson, the founder of a Canadian charity called Jesse’s Journey that exists solely to fund research for curing DMD: “You can roll over and play dead, or you can roll up your sleeves and get busy.”

Davidson’s words gave Andrew, an avid cyclist, the idea for Max’s Big Ride – a bicycle ride from Ottawa to Hamilton along the Trans Canada Trail to raise money for DMD research.

“We wanted to do something fun with Max to help find a cure for his disease. We’ve always biked as a family, with Max in his carrier on my bike, so we started thinking about a fundraising ride that was doable and safe,” Andrew says.

“I knew about the Trans Canada Trail – The Great Trail – and I think it’s a cool, unique thing. The idea for Max’s Big Ride was born as I mapped out route possibilities online and came up with one from Ottawa to Hamilton on the Trail.”

Gearing up for Max’s Big Ride

As Andrew and Kerri started planning, Max’s Big Ride began to take shape. The 600-km ride would happen over 11 days in June 2015.

Andrew would ride the Trail with Max stowed comfortably in a cargo bicycle donated by a sponsor; Kerri and Andrew’s parents would follow in a support vehicle. The couple scouted the route by car first, stopping to check Trail access points and to hike along sections to assess the terrain.

“The Trail is a moderate grade most of the way, except for sections in the Kawarthas, and although it’s mostly gravel it becomes paved as you get closer to Toronto, around Uxbridge,” says Andrew.

They sought help from Davidson and others in the Duchenne community to publicize the event and find sponsors. They decided that all money raised would be donated to Jesse’s Journey, which has funded more than $6 million in DMD research since 1995.

They even entered a radio contest to win a giant billboard in downtown Toronto – and won. For four weeks leading up to the event’s June 21 start date, the Max’s Big Ride billboard was seen by about four million people, to encourage them to support the ride and its cause.

A boy and his dad tackle the Trail

Andrew and Max spent 11 days together on the Trans Canada Trail, starting on Father’s Day in Ottawa and finishing on Canada Day in Hamilton. They raised a total of $55,000 for Jesse’s Journey to help find a cure for DMD.

The active, happy four-year-old rode every moment of Max’s Big Ride with his dad, even though he could have opted for the more comfortable support van with his mom and grandparents.

“We had so much fun on the Trail, and Max loved it,” Andrew says. “It was great being out in the wilderness together, pretending to be Ninjas in the forest. Even on our longest day – from Perth to Arden – when I could barely make 10 km per hour because it was a rough, bumpy section, Max was having a blast and actually thought I was riding fast. I wasn’t.”

He adds that Max took all the attention in stride, too. The event attracted numerous supporters and media out to meet the Sedmihradsky family at the start and finish of Max’s Big Ride, plus towns in between.

“In some places the whole town showed up to support us and reporters waited for two hours in Sharbot Lake to talk to us,” Andrew says.

“We’re really thankful to everyone for sharing our story – it helps us feel less alone with Max’s diagnosis. It’s a small thing we’ve done but hopefully it can inspire other people to tackle bad news in a positive way.”