Ont. mother wins battle for special exemption for son after rejection from ministry

A long fight for a Cookstown, Ont., mother to help save her child's life has come to an end.

On Friday, Lauren Dempsey got the news that her three-year-old son George was approved for the antibody treatment for the respiratory syncytial virus, or RSV, after being denied by the Ministry of Health for months.

George received the treatment, which is primarily available to high-risk children under two, earlier this year until he aged out.

The ministry told his parents he could no longer receive the treatment unless he got a special exemption.

Without the $42,000 treatment, his parents say he's at high risk of getting very sick.

George was just released from SickKid's in Toronto after a five-week stay. He spent one week intubated in the intensive care unit, fighting for his life after he became seriously ill with another RSV infection.

"In all of these four years, this was the first time I genuinely didn't know if he was coming home or not," says Dempsey.

It's not his first time battling the virus. RSV landed him in the hospital for two months in January 2020.

Around that same time, his parents learned he had a rare form of spinal muscular atrophy, affecting every muscle in his body, making it more difficult for him to fight RSV. He was given a two-year life expectancy.

"They said he doesn't qualify. He doesn't meet the qualifications, and we (the ministry) are not convinced if he got RSV it would be a major life event requiring hospitalization," Dempsey said in an interview with CTV News.

An online petition calling on the government to issue George a special exemption for the treatment received almost 20,000 signatures.

Along with his parents, who applied for the treatment a second time, the boy's doctors also resubmitted an application for an appeal.

"It's frustrating. I still to this day have not heard from the ministry of health with the approval. I've heard it from my MP and our RSV clinic at Royal Victoria Hospital as well as our neuromuscular team; who really, our contact there has been a lifesaver," says Dempsey.

George, who will celebrate his fourth birthday on Wednesday, is now back at home in Cookstown with his family as he awaits to begin the treatment again Thursday.

"I don't think that this will be the end of (the ministry) hearing from me with this because I think that it opened up a lot of people's eyes to what special-needs parents have to go through just to protect their kids, and it shouldn't be that way," says Dempsey.