A Peterborough-area business is baking up some support for a boy with cerebral palsy and his family in their quest for “game-changing” medical treatment in the United States.
To paraphrase the theme song to Ghostbusters — nine-year-old Oliver Demeester “ain’t afraid of no ghosts” — or his scheduled specialized leg surgery.
An avid lover of the sci-fi movie, the boy from Peterborough, Ont., has agreed to undergo a second selective percutaneous myofascial lengthening surgery this June on one condition: that his family takes him to New York City to see the famous fire station used in the movies.
His parents, Pieter and Angela, agreed.
“I’m excited about that too, to be honest,” laughed Pieter.
Born prematurely at 28 weeks, Oliver was diagnosed with cerebral palsy at 18 months old. The disorder impacts his legs, mainly his right limb, Angela says.
At the recommendation of other parents and therapists, at the age of three, Oliver underwent non-invasive SPML surgery in New Jersey. According to the family, only two orthopedic surgeons in North America conduct the procedure.
However, they say the surgery provided “amazing results,” as the release of spasticity in Oliver’s legs led to improved mobility and flexibility.
“It was night and day — he walked on his own,” Pieter recalled.
Six years later, however, Oliver has endured a mobility regression. He currently relies on braces and a walker while at school and in public. At home, he walks independently by hanging onto walls and furniture.
The parents cite a bone growth spurt which is causing his leg muscles to contract and shorten.
“Now he’s reaching, losing balance and leaning on things,” Pieter told Global News on Tuesday. “His one foot is turned in quite a bit. He falls down more and is crawling more.”
The parents also say the COVID-19 pandemic impacted access to therapy centres which were forced to close during lockdowns.
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“That was a hard time too,” said Angela.
Second surgery
Now they’re hoping a second SPML surgery will bring back their son’s freedom. The couple says the surgery is far less invasive than orthopedic options in Ontario which utilize plates, screws and resetting of bones. And, they say, the wait times are “practically none” in the U.S. versus 12 to 18 months in Ontario.
The surgery is a “game-changer” for Oliver, Angela says.
“I think our hope is to give Oliver a chance to explore more in his life,” she said. “He is a kid that has so much potential and I think it’s going to help his overall independence and mobility.”
“He’s at that age where he is still growing into his body,” added Pieter. “I just think it’s a perfect time. He’s more aware now of his body than he was at age three.”
The only thing standing in the way is that the surgery and post-operation year-long therapy are not covered by OHIP — meaning costs come out of pocket.
“As a parent, you’re always trying to find what works best for your kid,” said Angela. “You’re willing to try almost anything.”
That prompted the family to launch a GoFundMe page seeking financial support for the scheduled June 7 surgery and subsequent therapy. As of Tuesday afternoon, more than $7,800 had been donated towards the goal of $35,000.
“Amazing… it’s really overwhelming,” said Angela. “We’re so overwhelmed and grateful for all the people and their support.”
Doughnut sale
The support continues as Angela’s cousin Cory Dooher, owner of Dooher’s Bakery in nearby Campbellford, is holding the “Donuts for Ollie” fundraiser.
“When Oliver had his first surgery, I just donated a monetary value towards it,” said Dooher. “But this time I wanted to do something more where I knew they would get 100 per cent of the proceeds.”
Dooher says the initial plan was to sell a green doughnut since it’s the colour for cerebral palsy awareness. However, two doughnuts will be sold — one of Oliver’s favourite colour blue and a “green-slime” version combining the awareness colour and his love of Ghostbusters and the green ghost character Slimer.
The bakery has held prior doughnut fundraisers including in support of the Humboldt Broncos hockey team following the tragic bus crash in 2018.
Also last fall the bakery sold 3,540 doughnuts and raised more than $5,000 to support four-year-old Sophie Foley and her Peterborough family after the girl was struck by a vehicle just outside of the Norwood Fair on Thanksgiving Monday.
“The Sofie sale was huge — it would be wonderful to be able to do that again for Oliver,” said Dooher. “We’re really promoting and pushing it — every little bit counts and helps them out.”
The doughnuts are available by pre-order only and will be available on Friday, March 31. To order, call 705-653- 1460 or email info@doohers.com Monetary donations are also being accepted.
— with files from Sam Houpt, Global News Peterborough
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