FORT ST. JOHN, B.C. – A local mother continues to call on the provincial government to cover treatment for those diagnosed with type 3 spinal muscular atrophy (SMA).
Since 2018, Mandy Gallant has been fighting for the government to cover treatment for her 14-year-old son Devin. He was diagnosed with SMA, a genetic condition that causes muscle weakness and atrophy, when he was three and has been in a wheelchair ever since.
The treatment the family is eyeing will cost $375,000 per year for the rest of Devin’s life, and Gallant says the reason the province hasn’t approved the funding is due to Devin being able to walk, despite it only being five to ten steps.
“Without the treatment, he won’t walk. With the treatment, that gives him a fighting chance,” said Gallant.
Gallant is concerned with Devin’s upcoming recovery after an injury two years ago resulted in Devin being in a cast. She believes that’s when the atrophy “took over” and worsened due to his inactivity.
She believes being inactive for a long period of time once again will make the atrophy worse.
“Literally since the day he was diagnosed, I dreaded the day he hurt himself,” said Gallant. “Because the minute of the body stops moving, that’s when your atrophy kicks in. I keep telling myself, maybe he hurt himself so that he could get the treatment. I don’t freaking know. I don’t know. We don’t know what to do. We’re at a loss because everything is unanswered. We don’t know until it happens. ”
Doctors are unsure if he will be able to walk following the surgery, which his mom and medical professionals by his side hope will potentially result in the provincial government covering the treatment.
There are two drug treatments available for Devin, said Gallant. Nusinersen (Spinraza) costs $750,000 for the first four doses, and then the patient has to get a renewal shot every four months for $350,000. The treatment that Gallant is trying to get covered by the province is called Risdaplam (Evrysdi), which is taken orally on a daily basis for the rest of the patient’s life.
Gallant hasn’t been all alone when pushing for the funding, saying she’s had a meeting with North Peace MLA Dan Davies, who has spoken with Cure SMA to get the treatment funding as it is unavailable for anyone with type 3 SMA in BC.
Devin’s neurologist has also reached out to the Ministry of Health five times to see if they would approve Devin for funding. Most recently, the neurologist reached out due to Devin’s emergency back surgery on December 2nd, where rods will be installed in his back due to scoliosis caused by SMA.
Over time, Devin will lose all his muscles, and eventually his legs and be bound to a wheelchair. However, his family wants to give him a chance to be a kid for the time being.
“Picture an elastic band, like those big elastic bands. They said picture one of those and picture as your child grows, you’re stretching that elastic band, and then all of a sudden you stretch that elastic band so far that it just snapped. That’s what’s going to happen to his muscles.”
Gallant has been pushing to get funding for all type 3 cases, but there is also a chance that Devin gets taken on as a research case because type three of the disease is less common.
Gallant says she will continue to push for his treatment no matter how many times she gets rejected.
“We will never stop, and that’s what I tell him. I said they can tell me no, and I don’t care.”
Mandy’s sister, Trish Baker, created a GoFundMe for the family earlier this month to help with the costs surrounding Devin’s upcoming surgery. As of November 22nd, over $14,000 has been raised for the family.
Not only does the family need funds for needed equipment and travel, Mandy just had surgery on her back, so her husband, Eric, has been away from work and will continue doing so during Devin’s recovery.
Gallant is sending a thank you to the community for their support.
“I love this community, and I want them to know Devin’s story. He will get the treatment one day. The more people know his story, the more it’s going to get out, and that’s what the fight is about.”
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