Max's Big Ride raises awareness for Duchenne Muscular Dystrophy

Andrew Sedmihadsky's son Max is four years old. And, for about half his short life, he has lived with a rare disorder that causes muscle degeneration and affects boys between the ages of two and three years old.

Max and his dad ride to Hamilton from Ottawa on June 21

Andrew Sedmihradsky and his 4-year-old son Max are riding from Parliament Hill to Hamilton to help fight Duchenne muscular dystrophy. (Kerri Sedmihadsky)

Andrew Sedmihadsky's son Max is four years old. And, for about half of his short life, he has lived with a rare disorder that causes muscle degeneration and affects boys between the ages of two and three years old.

Max was diagnosed with Duchenne Muscular Dystrophy. As tough as things are now, Sedmihadsky says, it's the future that scares him.

Doctors have said his son may be in a wheelchair by the age of 12 and may only live to his mid 20s.

Even now, Sedmihadsky says, his son is a little unsteady on his feet. But that won't stop him from moving. In June, he plans to take a 600-kilometre bike ride with his dad to raise funds for research into treating the disorder.

The father and son will ride from Ottawa on June 21 all the way back to Hamilton. Riding bikes "has always been something they could do as a family," said Sedmihadsky, so he thought it might be the right way to spend time with his son while raising money for the cause.

"It's crucial that when you're faced with something that you don't give up," he said. "As a father I owe it to my son to do absolutely everything I can for him."

The money has already started to come in: $18,000 so far. Sedmihadsky said he appreciates "every dollar raised, and would be happy with what they have already."

They'll ride a cargo bike made in Holland and loaned to them by Urkai, a company in Burlington.

Sedmihadsky said, although there is no known cure for the disorder, there are medications that provide a temporary solution, most of which are not yet available in Canada.

Comments

To encourage thoughtful and respectful conversations, first and last names will appear with each submission to CBC/Radio-Canada's online communities (except in children and youth-oriented communities). Pseudonyms will no longer be permitted.

By submitting a comment, you accept that CBC has the right to reproduce and publish that comment in whole or in part, in any manner CBC chooses. Please note that CBC does not endorse the opinions expressed in comments. Comments on this story are moderated according to our Submission Guidelines. Comments are welcome while open. We reserve the right to close comments at any time.