‘The chairs are pretty decent in the snow,” says Steve Beaulieu, as he manually lifts and unfolds a jerry-rigged wheelchair ramp from the side of his family’s minivan.
But even “decent” means needing a slight push to get traction on ice-encrusted curbs.
As Beaulieu continues to fiddle with the van, his two youngest boys zip around behind him in their power wheelchairs.
Both Ross, 15, and Finn, 12, have Duchenne Muscular Dystrophy.
It’s the most severe kind of muscular dystrophy, says their father.
It is usually only found in boys - one in every 3,600 to be precise.
The disorder is caused by a defective gene, which is supposed to bring protein to the muscle. Some boys show symptoms in infancy but it’s usually around age six that the muscle degeneration becomes obvious.
“When they were younger, they walked and ran like regular children,” says Steve. “But it’s progressive.”
As they get older, both Ross and Finn will only become weaker and weaker.
Finn, the craftsmen and baker of the family, can still stand and walk short distances, says his father. But six months ago, the family decided to add a second power wheelchair to its list of extraordinary expenses, replacing the manual chair Finn had been using.
Ross, the family’s computer whiz who is at the top of his class at Vanier Catholic Secondary School, has been using his own power wheelchair for much longer.
“You have to take a run at it,” Steve tells Ross as his wheelchair’s wheels spin at the bottom of the van’s ramp.
Ross backs up and tries again. His father helps push him up the slope.
Finn then nearly runs his dad off the ramp as he follows Ross into the van. The inside now looks particularly small with two teenage boys and their two automatic wheelchairs.
Steve squeezes himself in and around their chairs.
He continues to talk as he cranks ratchet straps through chair wheels, attaching them to the floor.
“It’s really not safe,” he says.
There are no proper restraints to keep the chairs secure and the van hasn’t been properly converted, he says.
All he did was pull everything out of the back - chairs, benches and carpet - exposing the electrical work tucked into the van’s floor.
Family friend Aisha Montgomery also worries about the van’s safety.
“If they got pulled over by a cop, they’d get a ticket,” she says. “Plus it’s labour intensive.”
Montgomery is helping organize a fundraiser, which will raise money to help the Beaulieu family buy a new, properly-equipped van.
Not only do safety concerns keep family trips close to home, but the two boys and their chairs are such a tight fit the family can’t travel all together. Steve and his wife, Michelle, have a third son who is older than Ross and Finn. That means even trips to the grocery store leave someone at the family’s Fox Haven home or require a convoy.
Most families who need wheelchair-accessible transportation buy a regular vehicle and pay as much as $70,000 to have it converted.
But now an American company is making a van that looks like an SUV and is equipped with a ramp, wide-hinge door, non-slip floors and moveable chairs. Wheelchairs and scooters can sit in the back or front passenger spaces. The MV-1 only costs $54,000.
“There’s a dealership in Prince George,” says Steve.
The idea to hold a fundraiser was raised after he first saw the vehicle and started trying to figure out how he was going to pay for one.
Both Steve and his wife have full-time jobs but a lot of their income is gobbled up with extra expenses such as a live-in nanny and five to six trips to Vancouver every year to see specialists.
Even finding an accessible house was impossible in Whitehorse, leaving the family with no other option than to build their own.
When the weather drops down, the boys are pretty much restricted to the house, says Steve. Trips to Canadian Tire have to suffice for walks.
“We’re constantly advocating for things like the Millennium Trail, which is supposed to be accessible, to be cleared all year,” he says. “The (Canada Games) Centre is outstanding. We could not live in Whitehorse without that facility, even though there are some tweaks (needed) to make it more accessible.”
The Beaulieus are not unfamiliar with fundraising, but it’s never before been for their own family.
Every year, they help to raise thousands for muscular dystrophy research, says Steve.
Last year his wife Michelle, a marathon runner, led a Whitehorse contingent of about 35 people to raise $50,000 in the internationally organized Run for Our Sons.
“But this event, specifically, is Yukoners letting these guys know that we love and appreciate them,” says Montgomery. “Steve and Michelle and the boys are the kind of family that really would give you the shirt of their back. They’re the most generous community members you could ever imagine. It just feels so good to let them know that we’re here and we’re going to do whatever it takes to keep them in our community. It’s a real honour.”
Leaving the community has never really been an option, says Steve.
He points to the many friends that help them out, get involved and organize things, like this fundraiser, without even being asked.
“I wouldn’t consider living anywhere else,” he says. But the family would like to be able to explore the territory around them.
“We travel a lot with the boys,” says Steve. Taking a plane for other cities and countries is often easier than a walk around Whitehorse.
“We do trips to Vancouver Island and Mexico. We’ve taken them to places like Cairo. And we really, really try to do things like that but we haven’t been able to access the Yukon because we don’t have a vehicle that can take these chairs safely up to Denali or Tombstone or something like that. Obviously, we’re not going to go far off the road, but we’re really looking forward to camping with the boys. We haven’t been able to do that since they stopped walking.
“We’re planning a tour into Alaska this summer. If we have this vehicle we’re going to do something like that.”
The “Beaulieu’s Bus” fundraiser will be at the Mt. McIntyre Recreation Centre on Feb. 11 from 8 p.m. to 1 a.m. There will be live music, a silent auction and a cash bar. All proceeds will go to the family. Tickets are $20 and available at Icycle Sport. There is room for 300 people. They have to be 19 years or older.
Contact Roxanne Stasyszyn at
roxannes@yukon-news.com