10/28/2014 12:06 EDT | Updated 12/28/2014 05:59 EST

Parents of Alexis Leblanc, 7, hopeful for life-changing surgery

Josée Legault and Martin Leblanc, two Châteauguay parents, are hoping a surgery will change their son Alexis's life forever.

Like many seven-year-old boys, Alexis Leblanc loves playing soccer with his older brother and watching funny videos on YouTube.

He is also quite unique. Alexis was born with Treacher-Collins Syndrome, a rare genetic disorder that affects the bones, jaws, skin and muscles of the face. His small jaw didn't allow his airway to properly develop. His nutrition comes from a feeding tube and he communicates with sign language. 

Alexis doesn't go to the beach because a few drops of water in his breathing device could kill him. His parents have to keep an eye on him every second of the day and night in case his device gets blocked with a build up of mucus. When it does, he panics silently.

If no one is watching, he could die within minutes. 

Difficult choices

Two weeks after Alexis was born, his parents were given two options: Continue with years of complex surgeries or provide Alexis with palliative care and let him slip away. 

"It was the worst night of our life," says Leblanc.

"The first question we had is 'Can he be happy in his life?' and they smiled at us and got a big book of pictures with other kids who had his condition and we saw them happy and we decided to just go ahead and raise him so he can be happy. That's enough for us."

Since then, Alexis has undergone six surgeries, many of them lasting several hours, and his parents have had to face a series of difficult decisions. But deciding to opt for a complex, rare and potentially painful surgery with a 50 per cent chance of success has been the most difficult so far.

"We're extremely proud of him. Everything he went through, he did it like a champion," says Leblanc.

"When we look at other kids, they cry for a little boo-boo. He falls and gets hurt and he doesn't cry at all," says Legault. 

Complex surgery

Dr. Mirko Gilardino, plastic surgeon and the director of the H.B. Williams Craniofacial and Cleft Surgery Unit at the Montreal Children's Hospital, performed the surgery on Alexis. He cut Alexis's jawbone on both sides and implanted a device that will gradually separate the bones, propelling new bone to form in the space between. 

The goal is to elongate Alexis's jaw to the point where there is space to create an airway. 

"You cut the bone and you leave it alone for five days and the body starts to heal the bone. If you wait just the right amount of time, the body deposits bone there. So you're not only repairing bone, you're adding new bone and stretching the soft tissue around it," says Gilardino. 

Gilardino says he understands the process can be tough on the family — first to watch their child undergo a major surgery, and then to twist a screw that's coming out of their head every day afterwards.

"It's always a little scary for the family to turn a screw that's coming out of their child's face. But once they get used to it, they love it. They're participating in their child's care," he says. 

The doctor says his team does its best to ensure Alexis is not in pain. 

The cuts he made in the surgery are precisely mapped out using software and a biomedical engineer. Gilardino says the process means less time in the operating room and a greater chance of success.

Alexis's family has reason to be hopeful. Gilardino has already performed a similar operation on another young boy from Quebec and that child is now breathing without the help of a tracheotomy. Still, Legault says she's trying not to hang all of her hopes on the process.

"I call Gilardino 'miracle doctor' because we know he did some miracles before. There's a part of me that's happy it will change everything in our life. But there's another part of me that's like 'Wow, it's 50/50.'"