Troy Carter will soon have a new set of wheels, thanks to some creative thinking and the generosity of Flin Flon motorcyclists.
After a fundraiser held by the Flin Flon Motorcyclists’ Association, Carter will receive a specially-designed bicycle and his family will save thousands of dollars
The 12-year-old boy suffers from cri du chat syndrome, a rare genetic disorder that impacts cognitive and muscular development. Only one out of every 50,000 children has the syndrome.
The disorder gets its name from its key side effect in infant children – an alteration in the vocal cords that makes a child’s cries sound similar to the cries of a cat.
“When he was a baby and he cried, that’s literally what it sounded like, a cat yowling. It was eerie,” said Brandi Harkin, Carter’s mother.
“Technically, he’s 12, but mentally, he is about a year and a half to three years old, depending on his mood. He doesn’t quite talk yet. He’s been walking now for the past six years or so.”
One of the few ways Carter can exercise is by pedaling a specially designed bike. Low muscle tone is one of the side effects of his syndrome. Carter doesn’t have some of the more severe side effects often associated with cri du chat syndrome, including heart, respiratory, kidney and skeletal issues, and can actively walk – something many people with cri du chat can’t do.
“We got very lucky that a lot of his were only mental disabilities. There could be kidney or heart problems associated. One of the things was low muscle tone, so he has to work out a bit so he can stay up and stay walking,” said Harkin.
Carter’s current bike has seen better days. His family and supporters have been looking for a replacement. The bike needs to be custom-ordered and comes with a hefty price tag – around $3,800.
“We knew Troy was going to need a new bike this year. We weren’t sure how we were going to get it. Usually, me or his dad would buy it and get some modifications done – that part is mostly covered,” said Harkin.
In order to make the total, one of Carter’s support workers reached out to the Flin Flon Motorcyclists’ Association (FFMA) two weeks before the group’s annual Run to the Border on May 26. Harkin’s grandmother was a founding member of the group.
“He needed a new bike, he outgrew his previous one. I went to see what we could do about it and the rest is really history,” said Brent “Boomer” Burke, vice president of the FFMA.
During the poker derby and the social held as part of the event, Burke and other group leaders called out to those in attendance and asked for donations for Carter’s new bike.
On two occasions, it didn’t take long for money to come pouring in.
“About 15 or 20 minutes, we had around $1,800,” said Burke about the call during the poker derby.
“[At the social], we appealed to the crowd again. Within another five or 10 minutes, we had the rest of the bike.”
Burke confirmed that the bike, now fully paid for, has been ordered and will arrive in Flin Flon in the coming weeks.
“Within about 30 minutes, we had raised the price of the bike. I’m speechless. It was awesome. The feeling was tremendous, to be able to do that in such a short time,” he said.
The new bike will feature a handlebar that extends behind the rider, allowing either Harkin or a support worker to steer the bike.
“Whoever’s working with him that day can steer it. It’s going to be quite the workout for whoever gets to run along with him - me and his workers, I guess,” said Harkin.
Harkin said Carter knows his new bike is coming – and he is thrilled.
“He understands that he’s getting a new bike. He knows it had something to do with the bikers. We took him out to the clubhouse for the afternoon that day and we took him to see all the bikes – he loves motorcycles,” she said.
“He doesn’t have much of an understanding of what’s going on – but he knows he’s getting a new bike.”
