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

Mission downs Abbotsford to open season

Roadrunners defeat Panthers 29-8 in 2018 home debut

Mission to celebrate culture during three-day event

Culture Days 2018 takes place Sept. 28-30

Abbotsford company among 500 fastest growing in Canada

Valley Carriers keeps spot on Growth 500 list, but drops from 398 last year to 408 this year

Mission CAO Ron Poole is stepping down

Mike Younie will take over beginning Dec. 3

VIDEO: Vancouver Giants earn a 3-1 victory over Everett in season-opener in Langley

Langley’s major junior hockey team opened the season at home with a victory over the Silvertips.

Conservation officer frees B.C. deer from flotation gear mishap

BC Conservation Officer Service is reminding residents to keep backyards clear of entanglements

Lions earn stunning 35-32 OT win over Ticats

Epic comeback lifts B.C. past Hamilton in CFL thriller

Czarnik nets 3 as Flames dump Canucks 5-2

Calgary picks up exhibition win over Vancouver

Ottawa to name new ambassador for women, peace and security, Freeland says

Chrystia Freeland also confirmed Canada would spend about $25 million to fund number of initiatives

‘A little bright spot:’ Ottawa residents rescue dog trapped beneath rubble

Freelance journalist says rescue of a dog trapped under rubble was happy ending amid chaos in Ottawa

B.C. deaf community wants different sign languages on federal accessibility act

Advocates also want Indigenous Sign Language to be recognized on the Indigenous Language Act

Remainder of Vancouver Whitecaps season filled with ‘must-win’ games: coach

With Vancouver currently sitting four points out of a post-season spot, each contest is crucial

VIDEO: B.C.-born firefighter remembered by MP in emotional speech

Family asks first responders to look after one another in wake of suicide, growing concerns of PTSD

Airline has ‘close call’ with drone while en route to B.C. airport

Jazz Aviation reported the drone sighting near Vancouver to the RCMP and Transport Canada

Most Read