Drake Patenaude hasn’t seen some parts of his home for almost a year.
Patenaude is a 15 year-old boy who used to hang out with his sister in the basement of their family home, go to sleepovers and regularly go to school. But today, complications caused by his muscular dystrophy mean the first floor of the family home has become like a prison.
Longing for their teenage boy to have a normal life, his parents are now fundraising to make their house more accessible to their son.
Retrofits are needed after a minor fall last year hastened the inevitable for Patenaude and others who live with the genetic muscle-wasting condition — life in a wheelchair.
Someone might get hurt
After the fall, Patenaude could no longer walk, much less climb the stairs at the front door. He can only get inside or leave if two people carefully roll his wheelchair up or down each step.
The family worries it’s not safe but said they have no other choice.
“There’s no way I can do it,” Patenaude’s mom Tracy said. “Even for [my husband] it is dangerous — like if his back goes, then they both go down the stairs.”
The morning ritual of getting him out of the house was so risky, Patenaude’s high school told his parents not to send him to school anymore. A home tutor was assigned instead.
Patenaude is back at school. But his uncle and dad must carefully roll the wheelchair and the 140-pound teenager slowly down the stairs and then transfer him to his power scooter in the garage.
The Patenaudes have turned to social media to ask people to donate to their GoFundMe page.
Donations needed
They’ve asked the government and other aid agencies for help, but because Patenaude’s dad earns more than $45,000 a year from his oilsands job, the family doesn’t qualify for most grants.
Muscular Dystrophy Canada’s Tracy Ryan said families with incomes above the Canadian average usually don’t qualify for assistance.
Ryan, who is the organization’s director of advocacy and partnerships, said families often have to retrofit their homes and pay for power chairs and lifts for the home.
“[Families] might seem, based on the national average, to be quite well off, but when you consider they are not eligible for the supports and services available,” Ryan said. “Then they are on their own.”
Muscular Dystrophy Canada, which raises money for those in need, has given the family a $17,000 grant, the Patenaudes said.
The family hopes to raise another $40,000 for an accessible bathroom offering easy access to a shower and sink that’s the right height for their son, and an elevator that allows him to access every floor of the house.
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