FORT ST. JOHN, B.C. – A local mother continues her fight to get her 14-year-old son in for emergency back surgery in order for him to have a better quality of life.
Devin Gallant was initially scheduled to have emergency back surgery on December 2nd. Since then, he has received four cancellations.
Devin was diagnosed with Spinal Muscular Atrophy, a genetic condition that causes muscle weakness and atrophy, when he was only three years old and has been in a wheelchair ever since. The surgery he is expected to have will have rods installed in his back due to scoliosis caused by SMA.
While Devin awaits a surgery date, his mother Mandy, says he needs treatment, which has also been denied.
“I don’t understand how Devin keeps being denied treatment and surgery. He has proven he’s getting weaker. He does tests every time we are there to prove that. Devin can’t even get up by himself now, and is pretty much bedridden,” said Gallant in a statement.
Mandy says her son can no longer sit or stand for long periods of time without being in pain.
“We are literally watching Devin deteriorate.”
His mother says the original diagnosis Devin was given was a type 2/3 that changed to a type 3 as he started to walk, which isn’t covered by the province. Mandy says she has fought for three years to make provincial funding available for those with type 3 SMA to no avail.
Devin’s doctors have also been pushing for the treatment to be made available to him.
However, after conversations with B.C.’s Ministry of Health, they wanted a 2nd opinion from another doctor, who stated Devin didn’t need treatment and if given to him, it would only need to be for two years.
Mandy says they are now back at square one and believes the only way to help Devin survive is by admitting him into the Neurology Ward at BC Children’s Hospital to start intensive therapy. She hopes this route will help him get the surgery.
“With no surgery date set yet, this is only option to try and save what strength and mental health Devin has left. So we leave and fly down this [Thursday], and we are told it’s for an undetermined amount of time.”
The Gallants describe themselves as a sports family, which Mandy believes is part of Devin’s success. His passion for sports and being active helped his ability to walk, however, it is only for five to 10 steps before he needs a break.
“Over time, [doctors] say Devin is gonna lose all of his muscles and then just be firmly in his wheelchair,” said Mandy in an interview with Energeticcity in November. “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.”
Two years ago, Devin’s wheelchair ran over his ankle, resulting in him being in a cast, and Mandy believes the atrophy “took over” and worsened due to his inactivity.
A GoFundMe was created to help the family fund costs that have accumulated for the family over the past year, including travel, and needed equipment for Devin.