A Kirkland family is asking the federal government for help paying for medication that could save the life of their 17-year-old son but can cost almost $1 million per year.

Sammy Cavallaro of Kirkland suffers from spinal muscular atrophy, a genetic disease which affects mobility in children. The disease eventually leads to paralysis and even death.

Cavallaro requires round-the-clock assistance to eat, move and other tasks but still is able to attend John Abbott College.

"I love life. I have amazing friends and family that support me every day and do everything to take care of me," he said. 

SMA is treatable by a drug called nusinersen, which is marketed under the name Spinraza. Injected directly into the spine, the drug, which regenerates a protein missing in those suffering from the disease, costs $750,000 for the first year alone, making it one of the most expensive medications in the world.

Spinraza has been approved by Health Canada, but a December report by the Canadian Agency for Drugs and Technologies in Health recommended it only be used by SMA patients with the most severe form of the disease. 

Thus far, no province’s health plan covers Spinraza. 

“I find it crazy that people won’t pay for something that saves thousands of lives, thousands of lives made better,” said Cavallaro. “I just don’t understand it.”

Cavallaro's mother, Rosa, said she was relieved when she found out there was a medication that could help her son. 

"I was so happy, I thought all our hard work of fundraising has finally paid off, we have a treatment," she said. "Once it was approved in the U.S., we thought for sure we're next... There's some things in life you don't put a price tag on and life is one of them."

In a statement, the Quebec health ministry said it covers effective treatments regardless of expense but has taken the CADTH's recommendation into account when deciding against covering Spinraza. A spokesperson for the ministry said they are trying to team up with other provinces to negotiate a better price for the treatment with the manufacturer.