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

UPDATE: Dozens of farmworkers displaced after fire tears through building

Flames broke out Thursday morning in building that housed up to 80 workers at Abbotsford farm

Gerda Peachey to run for mayor’s seat

Community activist rails against raising of pride flag in 2015 and increased development

UPDATE: 83-year-old convicted murderer back in custody

Mission RCMP have located Ralph Whitfield Morris who escaped Mission Institution earlier today

Chilliwack RCMP seek shoplifting suspect caught on video

Man allegedly connected to automobile theft in Abbotsford, shoplifting in Langley

Abbotsford student hopes colourful chalk can bring online dialogue to ‘real life’

Anni Wust’s “forum board” aims to kickstart community conversations in Mill Lake Park

Find your perfect new job at the Black Press Extreme Education and Career Fair

Dozens of companies have set up in the Cloverdale Agriplex

VIDEO: B.C. ‘escapologist’ stuns judges on Britain’s Got Talent

Matt Johnson says televised water stunt was closest he’s come to death

B.C. hires 20 more conservation officers

The province announces 12 new locations for conservation officer services this year

B.C. pharmacist pleads guilty to animal cruelty charge

Joelle Mbamy was handed $1k fine, on top of $5k fine already imposed, and 10-year animal prohibition

‘N’ driver in McLaren caught going 70 km/hr in playground zone

Vancouver police said the driver was fined $368 and the luxury car impounded for seven days

Dr. LipJob ordered to stop doing botox and other medical procedures

Rajdeep Kaur Khakh ordered to stop unlawful practice of medicine

B.C. to prevent for-profit blood, plasma collection

Voluntary Blood Donations Act would make it illegal to pay for blood, plasma donations

Judgment levied in Lower Mainland mushroom skimming

A court has fined a man who made off with thousands worth of mushrooms

Bill Cosby guilty in sexual assault case

Comedian convicted of drugging and molesting a woman

Most Read