Max's Big Ride returns to Quinte region
By Samantha Reed
More from By Samantha Reed
Published on: June 28, 2016 | Last Updated: June 28, 2016 10:45 AM EDT
For the second year in a row, Max Sedmihradsky is spending his week hearing stories from his father.
These stories are special, because they are being told during a 600 kilometre bike ride from Ottawa to Hamilton.
"I've told him countless stories about The Dark Knight, ninjas and superheroes," said Max's father, Andrew. "We use it to pass the time."
This is the second year for Max's Big Ride, The seven-day journey that raises funds for research for Duchenne muscular dystrophy (DMD).
Five-year-old Max and his father stopped in Belleville Monday evening at Riverside Park. The duo were greeted by a small crowd of family, friends and supporters. The ride started on Saturday (June 25) and is expected to end in Hamilton — where the family lives — on Canada Day.
DMD is a fatal disease that causes muscle degeneration almost exclusively among boys. Most who are diagnosed lose their ability to walk around the age of 12 and don't live past their mid to late twenties.
Three years ago, Max seemed like a normal healthy boy, said his mother, Kerri.
Then his parents and daycare worker started noticing he was unsteady on his feet and wasn't able to climb or jump.
Shortly after Max was diagnosed with DMD.
"I was devastated, I cried for months. I couldn't go to work or do anything," she said.
Shortly after Max's diagnosis, Andrew decided he wanted to do something about it. He then came up with the idea of the ride.
Last year's ride raised $55,000 for research. The family said they are already seeing some steps toward finding a cure.
Max is one of four Canadian boys receiving a new treatment, Translarna. The treatment is not yet approved in the country, but the family has access to it through Health Canada's Special Access Programme.
"He now has more confidence climbing and he can walk further than he used to be able to," said Kerri.
It's not a cure, Max's parents said, but it does slow the decline of the disease.
"I'd never imagine that last year we'd be standing here talking about a new drug that he's on. So, hopefully, next year I will have another drug to talk about," said Max's father.
The ride has been really positive for their family, both parents said.
"Last year this was just a website I made in my basement that I hoped people would respond to, I never thought we would get some of the responses that we do," said Andrew.
Last week Max received a letter written from Prime Minister Justin Trudeau.
"I still really can't believe it. I looked at it about five times before my brain actually read it," said Andrew.
The most memorable response the family got was going to Tweed during last year's ride.
"To see a whole community come out and embrace and encourage what we are doing was so incredible," he said. "It is something I will never forget in my life."
Responses like this really help Max and Andrew get through tougher biking days.
"Whether it is someone honking past and giving us a thumbs up or liking posts on Facebook or sending us messages, it's really great," he said.
All funds raised during Max's Big Ride go to a foundation called Jesse's Journey.
To donate, go to jessesjourney.com or for more information on Max's Big Ride, visit maxsbigride.com.
Water levels being watched