A B.C. family is breathing a little easier Tuesday after a life-saving surgery has finally gone ahead.
The Gallant family from Fort St. John has been trying to get their son Devin surgery to correct a worsening curve in his spine.
Devin has Type-3 Spinal Muscular Atrophy (SMA), a genetic disease that causes the body’s muscles to waste away.
His surgery was cancelled four times due to rising hospitalizations from COVID-19 and staffing shortages.
But one day before Devin’s 15th birthday, he underwent surgery at B.C. Children’s Hospital and has already been discharged from the ICU.
“The surgeon was so satisfied. He came in today and told us he was so satisfied with how the surgery went and how Devin’s recovery is going so far and getting out of the ICU so fast,” Devin’s mother Mandy said.
“He was out of the ICU within 24 hours. And he didn’t even need oxygen after. He’s a fighter.”
Devin was able to stand up twice Tuesday and put some weight on his feet and for now, the family is just taking it day by day.
He may even go into physical therapy after being discharged from the hospital next week.
“Everything is just day by day,” Mandy said.
“It’s been hard, ever since August, finding out about surgery. The first cancellation was the hardest thing to handle.”
It has been a long journey for the Gallant family.
They have been fighting for treatment for Devin since February 2019.
They still need access to medication called risdiplam, however, and have applied to the Special Access Program multiple times. Mandy said they have been told the final meeting should be on Tuesday and then they are hoping it gets approved for Devin’s treatment.
“It’s insane when it’s a life-saving treatment and to put a price tag on a child’s life by not giving it to him because he walks five steps,” Mandy said.
“Do you know how hard it is for him to walk those five steps? He’s had to work the last 15 years to get that strong and not every SMA patient has the will that Devin has.”
The family does not think that they would have received the help they needed without being vocal and speaking out about Devin’s condition and the surgery delays.
They also credit their support system back home for getting them through the tough times.
“Fort St. John has been amazing,” Mandy said. “We miss home so much, we can’t wait to get there.
“All of our support systems (are) at home and they’re 14 hours away.”
The hope now is that Devin can take a few steps on Wednesday and he will continue to improve every day.
“He’s doing OK, his spirits are good, he’s ready to face the challenge,” Mandy said.
Supporters of the family have launched a GoFundMe campaign, which has raised more than $28,000.
— with files from Aaron Mcarthur