She bikes because her brother couldn’t.
For the second time, Debbie Vernon is raising awareness for mitochondrial disease by biking across the western provinces into Ontario.
She does the 4,000 kilometre trek to remember her big brother Scott and with hopes another family won’t suffer losing a loved one the same way.
“It’s something that needs to get out there in the mainstream. It’s rare and not much is known about it so there are families out there today that have something wrong with their children and don’t know what it is,” Vernon said a day before she left on her ambitious ride.
“I guess I ride because Scott couldn’t. He used to want to ride his bike so much but he couldn’t without getting sick.”
Mitochondrial disease is as disease of the energy cells that effects different organs in the body including brain, heart, GI tract, muscles and eyes.
For Scott the disease effected his brain, heart and muscles.
He was often weak, and although he desperately wanted to ride his bike each time he would get a severe headache and stomach ache.
At first the family thought it was the flu or another minor illness and that he just needed rest. But he would have severe headache and stomach aches about every six months.
Scott died in 1985 at the age of 12.
At the time his little sister was just about to turn nine.
Although he’d suffered through the disease for quite awhile it wasn’t until a week after Scott died the family had answers.
“Scott suffered from strokes and seizures. He went blind just before he died. This disease is hard to explain to doctors. A lot of doctors themselves have never heard of mitochondrial disease,” Scott’s mother Linda Pilon said.
Although it’s been 30 years since his death awareness and treatment options are limited.
“I think there’s more research being done on it but it isn’t something many people know about. Still it’s fairly rare so there are doctors that don’t know about it,” she said.
In 2012, the first time mother and daughter set out on their bikes for Scott’s Ride the duo went to Toronto.
This time Vernon will ride alone while Pilon drives the support vehicle with great-grandchildren Quinn Davy, 18 months, and Aiden Bailey, 5.
“It’s important to get them involved so they know Scott,” Pilon said. “When your son dies you’re hopeless so when you do a ride you hope you’re bringing hope to someone else.”
Scott’s Ride rolled out of Keremeos this weekend and is expected to arrive in Ottawa about three weeks from now.
The Review will update readers on their story.
A Facebook page has been setup for Scott’s Ride and a bank account has been open at CIBC if anyone wants to donate.