Local teen set to receive spinal muscular atrophy drug treatment after decade long wait

FORT ST. JOHN, B.C. – A local mother’s fight to have her 15-year-old, Devin, receive drug treatment to potentially improve his quality of life has paid off.

Mandy Gallant received a call from her son’s neurologist on Tuesday to inform the family that he had been approved for Risidiplam, a recently approved drug by Health Canada to treat spinal muscular atrophy.

Devin was diagnosed with Type-3 SMA when he was three years old, and the family has been waiting ever since for a drug treatment. Mandy has been fighting for over three years to gain access to treatment for her son.

Health Canada defines SMA as a “progressive neuromuscular condition that affects the nerve cells in the spinal cord and impacts the muscles used for activities such as breathing, eating, crawling and walking.”

Risdiplam is the first at-home treatment for the genetic disease and works by helping the body create more “survival motor neuron protein.” Those diagnosed with SMA produce little to no SMN protein.

B.C’s Ministry of Health is covering the cost of the drug for the next year, with Devin heading to the Lower Mainland every three months for a review to see how his body is reacting to the treatment. At the end of the year, doctors will contemplate if continuing the treatment is the right move for Devin.

The price tag on the drug is roughly $350,000 a year, and if it proves effective, Devin will be taking it every day for the rest of his life.

Since the drug has just gone through trials before getting approved, there is a lack of data on its effectiveness. Mandy says the outcome for Devin is unknown, however, health professionals told the family that staying active will support the drug’s efficacy.

“They tell us that if Devin were the type of kid in a wheelchair who just stayed still and took this drug, it probably wouldn’t do any good to him. But giving Devin the right therapy programs and the right outdoor activity where he’s moving his body more, that’s going to help make this drug work better,” said Mandy.

Devin has a new local therapist that will be working through an extensive therapy plan created by the BC Children’s Hospital.

The family is celebrating a few wins after fearing the worst following four cancellations for surgery to correct the curvature in Devin’s spine caused by SMA.

Devin received the surgery on January 28th, the day before his 15th birthday.

The local support — referred to as”Devin’s army” by his mother — has been a huge driving force for the results the family is seeing, Mandy said.

Now, with his family by his side, Devin is taking strides in his road to recovery, literally. Despite 63 staples in his back and pains only he can describe, Devin has forced himself to take steps outside of therapy. He made a goal that he was going to take a shot on a new basketball net given to him by the hospital before he makes his way back to the Peace next week.

There is one thing no one can deny, Devin is a fighter, and everyone is cheering him on.

A GoFundMe was created to help the family with costs that have accumulated over the past year, including travel, and needed equipment for Devin.