Family seeks funding for ground-breaking medication
Sammy Cavallaro is an ace student finishing his first year studying business management at John Abbott College. He wants to attend Concordia University ’s John Molson School of Business.
His motto is “every day is a good day ” and his mother Rosa Mariani calls him “the most positive person I know.”
Cavallaro spends his days in a wheelchair. He can’t scratch his nose, feed or dress himself or even turn over in bed at night. A baby monitor connects him with his parents. When he calls out, they take turns getting up to turn him — on average four times a night. His physical independence is limited to sitting up without support for a few seconds and a modest range of motion in his right hand. He can manoeuvre his motorized wheelchair and use an iPhone 6.
The teenager’s respiratory system is weak, which means there is nothing common about his body ’s reaction to the common cold. In 2010, he underwent surgery to correct the curvature of his spine. His ribs were crushing his lungs, making it difficult to breath.
Cavallaro has Type 2 spinal muscular atrophy, a rare neuromuscular disorder that causes muscle wasting and mobility limitations.
A new medication is on the market that could help improve the teenager’s quality of life but the medication costs $750,000 for the first year and up to $375,000 for each consecutive year and is not covered by Régie de l’assurance maladie du Québec (RAMQ). The Kirkland family has no private insurance.
In December, the Canadian Drug Expert Committee (CDEC) recommended the cost of the Biogen Canada medication, marketed as Spinraza, only be reimbursed to patients with Type 1 SMA, the most severe form of the disorder.
Earlier this month, Cavallaro, sister Julianna, dad Aniello and mom Rosa Mariani boarded a bus with supporters and other families struggling with SMA to head to Ottawa to lobby for support. They met with Lac- St-Louis MP Francis Scarpaleggia and their efforts were captured by the media.
“We got exposure and that’s what we need,” Aniello Cavallaro said. “We were told that the issue is a provincial one. Now we need to meet with (Quebec Health Minister) Gaétan Barrette.”
They have contacted their MNA Martin Coiteux (Nelligan riding) and are hoping that will lead to a meeting with the health minister.
“Something’s got to give,” Aniello Cavallaro said.
Mariani first noticed something was wrong when her son was five months old and had stopped rolling over. By nine months, he could no longer support his head. She said it was the first case of SMA the doctors had seen in 25 years. They had little information or good news to share.
Mom drives Cavallaro to and from CEGEP and brings him home for lunch. The teen needs roundthe-clock care and has a full-time attendant at school to work the computer. Special arrangements are made for exams because Cavallaro can’t write. He speaks the answers and the attendant writes them down.
Mariani’s schedule revolves around her son’s care. She does not complain, but she does worry.
“When you have children, you worry,” she said. “With Sammy, multiply that worry by 100. My body no longer knows how to relax. He catches a cold and I think it’s the one that will get him. I worry for his life moving forward. What happens to him if something happens to us?”
Over the years, the family has raised thousands of dollars towards finding a cure for SMA.
To learn more about Sammy Cavallaro, visit www.sammycavallaro.com.