The Parry Sound community came out to show support for a local hero taking on a rare neuromuscular genetic disability.
Lyla Sheriden-Flemming will be 6 years old on June 24 and was diagnosed with Coffin-Siris Syndrome when she was 18 months old. Members of the community came out to Don Cherry’s Sports Grill on Thursday May 11 to a Parry Sound Bike Night event in her support.
Lyla’s mom, Alyssa Flemming, explains the syndrome is caused by a mutation in the ARID-1B gene. Lyla’s dad, Adam Sheriden, says as far as outcome or prognosis, doctors didn’t know how she would progress.
“At first it was, this could be fatal. And then it was she may never walk. We were encouraged to learn sign language when she was a baby because they said that she may never talk,” he says.
However, Sheriden says in Lyla’s progression of her own trajectory, she’s blown all expectations out of the water. He says the ARID-1B gene is of the higher functioning as far as independence for mobility.
Flemming says at the May 11 event, Lyla was running around, always had something to say and continuously defies the odds stacked against her.
“This whole thing came out of us doing some fundraising on our own for a possible treatment option that’s being developed in Europe. So, it’s kind of a global initiative with a bunch of highly specialized physicians and it’s parent-led, as far as funding,” he says.
According to Lyla’s parents, the ARID1B gene is responsible for other genes’ expression. Her’s only works at half capacity and right now there is a team of scientific specialists working on a way to mutate the healthy portion to allow it to operate at 100 percent. Flemming says that would mean all brain function would be restored and a lot of Lyla’s difficulties wouldn’t exist anymore.
Sheriden says as far as the local fundraising goes, the parents are going to be opening a savings account of sorts. This way, he says if Lyla ever needs to access funding when her parents aren’t around, the fund is there for her.
“We have had some rough times over the last 5 years with everything she faces daily, yet she is the happiest soul you’ll ever meet,” Flemming says on a Facebook post.