‘Butterfly boy’ with rare skin condition battling to find a cure

WATCH: For the handful of Canadians born with “butterfly syndrome”, the world might seem like a lonely place. Every touch or gentle hug causes pain and bruising. There’s no treatment and sufferers rarely live past 30. Laura Stone met one courageous boy who is determined not only to conquer his pain, but to help others.

EDITOR’S NOTE: This article and video were originally published in 2015. Jonathan Pitre passed away April 4, 2018. 

RUSSELL, ONT. — He seems like any other boy who loves his dog. But for 15-year-old Jonathan Pitre, the connection runs so much deeper.

“He’ll never jump on me, he’s never actually jumped on me,” Pitre says of his two-year-old Boston Terrier named Gibson.

“Even in the beginning, when we didn’t know much about each other and everything like that, he just knew for some reason and he’s never jumped.”

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Jonathan was born with an incurable skin condition called Epidermolysis bullosa (EB).

EB leaves him with painful, burn-like blisters all over his body. It’s a genetic condition without a cure, and over the past year, Jonathan’s wounds have gotten worse.

“I see pain through Jonathan’s eyes,” says his mother, Tina Boileau.

Boileau taught herself how to care for her son. His skin is as fragile as a butterfly’s — a symbol she wears around her neck.

“It was tough times when he was a baby because he couldn’t tell me what was going on when he cried. I mean anything was a challenge, from eating, to dressing him, to bathing him,” she says.

Every two days, Boileau bathes him and changes his bandages – a process that takes three to four hours each time.

By the end of the bath, Jonathan can barely keep his eyes open.

“I used to just stand up the whole time, but as we’ve gone on my body has gotten a lot worse and by the end I just can’t hold up anymore. If I stood up the whole time, my legs would just drop,” Jonathan says.

He goes to high school, but because of his schedule and frailty, he never has time to socialize. He spends his free time reading and playing with Gibson.

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“He is my only friend,” he says.

Jonathan is one of an estimated 5,000 people with some form of EB in Canada. There are three degrees of severity and patients with the most severe form aren’t expected to live past their thirties.

His doctor at Sick Kids Hospital in Toronto sees her patients’ perseverance every day.

“Right now there is no cure for EB, however, there is very exciting research going on all over the world,” says Dr. Elena Pope.

Three years ago, Jonathan met Deanna Molinaro – the first person he’d ever seen with the same condition as him.

At 23, Molinaro goes to college and drives a special truck, with the goal of being a costume designer.

And while she’s accomplished a lot in her own right, she says she looks up to Jonathan, too.

“For his age he’s so mature and so wise about everything. I was never like that at his age. I really look up to him as a person,” Molinaro says.

An avid sports fan, Jonathan has partnered with his favourite hockey team, the Ottawa Senators, to help raise awareness about EB.

He’s already raised more than $100,000 to help the Debra Canada organization find a cure.

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Even on his dark days, he won’t give up.

“This is tough and I’ve felt before like I just wanted to lay down and quit and let someone else do the job, but there are people who are doing that job and that made me think, if they can do it why should I just stop and quit?” says Jonathan.

And he vows to keep fighting for everyone who’s facing the same painful battle.

“It’s very important for me.”

READ MORE: ‘Butterfly boy’ Jonathan Pitre overjoyed after success of experimental treatment

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