When Marie-Anne Levasseur reached out to the community for help this fall, she was hoping to raise enough money to ensure that her son’s new power wheelchair, approved by the Ontario Assistive Devices Program and ODSP, would be equipped with a power lift.
The province pays for a basic wheelchair; the power lift, which provides a greater degree of independence and accessibility, is considered an extra.
Her son Sylvain-Nicholas Levasseur-Portelance needs a new wheelchair – and the lift will let him reach the counter and the dining room table in his home, get himself onto the sofa, reach items on the shelves when out shopping.
Sylvain has Spinal Muscular Atrophy, or SMA. It’s a degenerative neuromuscular disease: the loss of motor neurons leads to the eventual atrophy of the muscles that control walking, sitting, the movement of the arms and hands - even swallowing, and breathing.
The most severe form, Type 1, appears in infancy, and is the number one genetic killer of infants under the age of 2, world-wide.
Sylvain has Type III, which means that until he was about 12, he was able to walk on his own, although he always faced challenges. As the disease progressed, he went from ankle-foot braces, to a wheelchair that he was able to move on his own.
Now 24, he relies on a power wheelchair.
Marie-Anne moved to Wasaga Beach earlier this year, where Sylvain has now joined her, but for many years the family lived in Bradford.
It was while they were living in Bradford that Sylvain was diagnosed with SMA. And it was in Bradford that Sylvain became involved in the Rebecca Run for Families of SMA, a charity raising funds towards a cure for the disease.
He eventually raised over $15,000 and participated in the annual Rebecca Run in Newmarket himself, walking the 3K route as long as he was able to.
Sylvain was not only chosen for the Rebecca Run Wall of Honour in 2009, he was also presented with a BWG Youth Civic Award.
That was why Marie-Anne reached out not only to her new community of Wasaga Beach, but also to Bradford – and both communities responded.
On Thursday afternoon, representatives of four Fire Fighters’ associations, from both Bradford West Gwillimbury and Wasaga Beach, met at Wasaga Beach Fire Station 1 to present Marie-Anne and Sylvain-Nicholas with donations.
The Wasaga Beach Professional Firefighter Association contributed $500 – a sum that was matched by the Wasaga Beach Volunteer firefighters.
“Hopefully it helps with things,” said firefighter Kevin Pike, making the presentation.
“We know what it takes to fundraise, and it’s not an easy job,” added local firefighter Heather Clemente.
Also attending was full-time Bradford firefighter Jason Edghill, presenting donations of $250 from the BWG Professional Firefighters, and another $100 from the Bradford volunteer association.
“We hope that helps,” said Edghill.
“Thank you, everyone. You really warmed our hearts,” responded a tearful Marie-Anne.
The success of the fundraising, both online and from donors like the firefighters, means that not only will Sylvain’s new wheelchair be equipped with a power lift, there will be enough left over to purchase another item on his ‘wish list’ – a new Cintiq Board and other assistive devices that will help Sylvain pursue a career as an artist.
Sylvain discovered his love of art at any early age. With the help of the Children’s Wish Foundation, he created the ‘My Little Pony’ Stellar Eclipse, and was the voice actor for his character in an episode of the cartoon series.
Given a tour of the Wasaga Beach fire station, presented with firefighter ‘flashes’ and t-shirts by Deputy Chief Craig Williams, Sylvain was also invited to design a mascot for the local firefighters, once he gets his new equipment.
“Thank you so much,” said Sylvain. “I really appreciate it. It means a lot!”
Although the initial fundraising has been a success, the GoFundMe page is still active. With immediate needs met, Marie-Anne is now looking for help to complete the renovation of her Wasaga Beach home, to make it more accessible for Sylvain.
Renovations were begun, and a ramp was installed, but limited finances and an unscrupulous contractor put the work on hold. Topping the list would be a fully-accessible shower for Sylvain, said Marie-Anne, a single mom who is herself on ODSP.
And she has one finale wish: that OHIP will cover the cost of an SMA treatment for son.
It was through the work of SMA warriors like Sylvain-Nicholas that research and funding led to break-throughs in gene therapy. Unfortunately, the cost of the new drugs is out of reach for most.
OHIP now has authorized coverage of Spinraza, one of the drugs developed, but only up to the age of 18. Without health insurance, the cost is prohibitive – over $700,000 for the initial injection, and approximately $300,000 per year for the treatments that follow.
There is one ray of hope. The Ontario plan does grant coverage for older patients on “compassionate” grounds, determined on a case-by-case basis.
Marie-Anne is hoping that, if she can set up an appointment with a neuromuscular specialist, Sylvain-Nicholas will be able to apply for consideration, and receive the treatment that will halt the progression of the disease. The problem: everything has been put on hold, due to COVID.
“You’re watching your child go from walking great, to pushing himself in his wheelchair, to not being able to,” she said. “The disease is a progressive disease – and progresses, and progresses…”
To contribute to Sylvain’s GoFundMe page (in the process of being updated), click here.
