CORNWALL, Ontario – If you’ve never met Jonthan Pitre even a few moments with the inspiring Ontario teenager is something you won’t forget.
Pitre was honoured in Cornwall Monday for the work he has done to bring awareness and offer a face to one of the most painful and debilitating conditions known to modern medicine – Epidermolysis bullosa (EB), a condition that causes his skin to blister and tear apart at the slightest contact.
He lives in nearby Russell, but was brought to Cornwall Monday to drop the puck at the Cornwall Colts game at the Ed Lumley Arena and was also given a tour of the Cornwall Fire Station and saw a bit of the city from the front seat of one of the fire trucks.
“Even when it’s not a good day…he makes a good smile out of a bad day,” mom Tina Boileau said of her son, dubbed the Butterfly Child because his skin is as fragile as the tiny insect’s wings.
Pitre has been featured in print media, and a powerful TSN special that showed first-hand the day-to-day struggles of people with EB.
He must have the bandages that cover his body completely removed, and replaced, every two days. And Pitre is pain all the time.
All. The. Time.
He lives with the spectre of pain from the time he wakes up in the morning until he nods off to sleep. Even eating can lead to fiery lesions inside his mouth and throat.
But to talk to Pitre, who at 15 is considered middle aged among EB patients who typically lived into their 30s, pain is second to enjoying life.
And hockey. His first love is sports.
“I’ve always liked hockey,” he said Monday from a wheelchair at ice level as the Cornwall Colts warmed up in the background. “I always use all the energy I have because I won’t let EB stop me from living like I want to.
“I know I’ll be tired later. But I’ll still give it.”
His mother said making trips to Cornwall and spreading the word about EB, which has afflicted as many as 2,000 children in Canada, is important.
A local fundraising drive, through the sale of plastic bracelets, helped raise $5,000 for an EB support group.
“Having people reach out to us has been instrumental in trying to get the word out there,” Boileau said. “We want EB to be known as a very important disease that needs to have some attention because there is no cure.”
Local boxing star Tony Luis made the trip to the Colts game Monday to meet the young man and offer some words of encouragement.
“I wanted to meet you and show you some respect,” Luis told Pitre.
When asked if he has become an inspiration to other people, including athletes, Pitre considers his words carefully.
“I really don’t think of myself like that. I want to stay the kid I am,” he said. “I don’t want to get to become a person I am not. But I know I am a leader and I will do what I can to raise people’s spirits and do all they can to enjoy the rest of their lives.
“So I guess maybe I am.”
More than you know, kid.
