Harrison Blake was born a healthy baby boy in May 2020.
When he turned one, his parents, Ken and Brittany Blake, noticed he wasn’t hitting his developmental milestones.
“We’d taken him into his pediatrician, and he wanted to do some follow-up, get some genetic testing done,” said Ken. “In doing that genetic testing, we’d find out that he’s got this ultra-rare disease known as GM1 gangliosidosis.”
It took six months to receive the diagnosis. GM1 is a terminal, genetic disorder that destroys nerve cells in the brain and spinal cord. It affects one in every 100,000 to 200,000 kids around the world.
In the span of a year, Harrison lost the ability to move, speak or feed himself, and now uses a wheelchair to get around.
“We still get a few giggles here and there, he’s still able to squeeze and he knows his people, but otherwise, it’s just slowly taking him from us,” said Ken.
With Harrison’s medical equipment, and the arrival of his younger brother, Grayson, suddenly the family started to feel restricted in their own space.
Brittany and Ken had been doing some home improvements over the years, but once Harrison was diagnosed, their focus shifted to caring for their son.
Brittany explained they would have to have to lift Harrison’s 80lb wheelchair up and down their front steps and move furniture around to fit his wheelchair passed their fridge and kitchen table.
In April, Stranville Living Master Builder initiated the Who Deserves Better Challenge, setting out to surprise a family in need of home upgrades.
“Harrison’s letter came in from his aunt, and right away we were all touched,” said Samantha McDonald, interior designer with Stranville. “We are all parents and we just couldn’t imagine what they were going through with their kids.”
Brittany asked for a few modest things : “I would really love some new windows, maybe some new doors, and if we’re lucky maybe some new floors.”
But McDonald knew way more could be done.
Little did the Blake family know, more than 20 trades partners, including Adora Kitchens, hopped on board, donating materials and labour to makeover the home in just five days.
“We’ve been in this community for such a long time,” said Rob Harthoorn, Adora Kitchens sales manager. “For us to give back to a family in need within our community is nice to be able to do that.”
“Monday morning [July 24th ], first thing, 8 a.m., we ripped out the kitchen, and by 11 o’clock we were installing the new kitchen,” said McDonald.
On July 29th it was time for the surprise reveal.
The crew managed to install a new deck with a ramp for Harrison’s wheelchair, new windows and doors and renovate the kitchen, boys’ room, bathroom, and master bedroom. It was the surprise of a lifetime.
“To be able to move Harrison around in the wheelchair, is the biggest part of this,” said Ken.
“It was just like the proudest thing our staff has ever done or been a part of, and we just can’t wait to do it again next year,” said McDonald.
Harrison’s condition is progressing, but one thing stays on Brittany’s mind
“The reality is, we still have a son that is very sick and is going to get sicker,” said Brittany.
A few days after the big reveal, the Blakes had to have a difficult talk about Harrison’s condition and what sort of medical interventions he would need. The family could finally fit in one room to have this discussion.
“It really has made a tough time for us just a little bit more bearable,” said Brittany. “At least we’re comfortable and safe now.”
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