Ottawa teen, known as ‘butterfly boy,’ dies of rare skin condition

Tributes pouring in for Jonathan Pitre, including Prime Minister Justin Trudeau calling him a hero

An Ottawa-area teen with a rare and painful skin condition who worked determinedly to raise awareness about the disease has died, his mother said Friday, calling her son a “fearless warrior.”

Jonathan Pitre’s mother, Tina Boileau, said in a Facebook post that her son pushed to increase people’s understanding of epidermolysis bullosa, or EB.

“Jonny’s story has been made very public over the last few years as he invited you into his life and his daily struggles as he tirelessly fought to raise awareness for this horrific disease,” Boileau wrote. “I am proud to say you did it Jonny boy!”

There is no cure for EB, a rare genetic disorder that causes skin to blister and fall off, sometimes even with the slightest touch. An estimated 3,500 to 5,000 Canadians are born with EB. Pitre was called Ottawa’s “Butterfly Boy.”

Boileau said her family is thankful for the support they have received, but is requesting privacy as they grieve.

Pitre reportedly died Wednesday in a hospital in Minnesota, where he had been receiving treatment for the disease.

DEBRA Canada, an organization that supports families dealing with EB, called Pitre their “beloved ambassador.”

“Jonathan fought long and hard, and was extraordinary at raising awareness for all those affected by EB,” the organization, whose president is Boileau, said in an email Friday.

Meanwhile, tributes poured in for the teen.

Prime Minister Justin Trudeau called Pitre “a hero in every sense of the word.”

“(He was) a courageous and determined fighter who persisted in the face of every challenge, and who inspired so many,” Trudeau said on Twitter.

The Ottawa Senators said on Twitter that the team is mourning the loss of a “special friend.”

Pitre, a fan of the NHL team, reportedly became close with the Senators when he began sharing his story and spreading awareness about EB.

“He taught us what courage and resilience really is, all the while displaying his trademark enthusiasm and smile,” the Senators said. “We’ll all miss you, Jonathan.”

Meanwhile, the mayor of Russell, Ont., about 40 kilometres southeast of Ottawa, said the community ”has lost a incredible young man.”

“Jonathan, your courage, your strength of will and your love of life will always be remembered,” Pierre Leroux said in a tweet.

The Canadian Press

Just Posted

OCOP: ‘Hiring without boundaries’

Brody McDearmid is putting a focus on hiring people with disabilities at Meridian Meats.

Children getting too much screen time

A Maple Ridge mother opens up about her children’s use of tablets, smartphones and television

Start of the weekend will be a wet one in Maple Ridge

Weather statement from Env. Canada for Friday

Maple Ridge will vote on garbage pickup this election

Plebiscite will piggy-back on to civic vote

Free parking spots at Ridge Meadows Hospital eroded

Lab patient says he may go to Mission over parking issue

VIDEO: Maple Ridge tent city residents back after flash flood Friday

Mayor though says they shouldn’t have to go back

5 to start your day

National forecaster issues rainfall warning, three crashes in Metro Vancouver overnight and more

Burnaby RCMP investigating ‘serious’ rollover crash

Shortly after 1 a.m. Friday, police said a truck crashed closing Lougheed Highway

Man dead after being hit by 2 vehicles on Highway 10

Pedestrian in his 50s has died after being hit by two vehicles, one of which stayed: Surrey RCMP

1 person dead after crash on Highway 17 in Delta

Footage from the scene shows a mangled white truck that appears to have slammed into a barrier

Legal society poster seeks complainants against two cops on Downtown Eastside

Pivot Legal Society became aware of allegations made against the officers after a video circulated

Jury to deliberate in case of Calgary man accused of murdering woman

Curtis Healy could be convicted of first-degree murder, second-degree murder or manslaughter

House arrest for man who abused disabled B.C. woman, then blamed her

‘Groomed complainant’ and ‘violated position of trust,’ judge says

Liberals want to know what Canadians think of legalized weed

The federal government will comb social media for Canadians’ pot-related behaviour

Most Read