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

Friends of ‘Mac’ rally to fund young family left behind by former martial arts teacher in Surrey

‘He’s well loved,’ says operator of Fraser Heights academy where Mackenzie MacWilliams studied, worked

Police food drive to help feed North Delta kids

Donations collected will go support the Rotary Club’s Starfish Pack program

Surrey burglar loses appeal on Hook & Ladder break-in conviction

The case centred on a Jan. 3, 2016 break-in at the Newton pub

‘Inventive ideas’ sought soon for Surrey One Act Festival, set to return to Whalley stage

Also planned by Royal Canadian Theatre Company is a Five Minute Play Writing Challenge

U.S. inn owner, charged with smuggling people into Canada, granted bail

Robert Joseph Boule ordered to turn away anyone indicating a plan to enter Canada illegally

VIDEO: Killer whales hunt for seals in Vancouver harbour

Bigg’s killer whales feed on marine mammals like seals, sea lions, dolphins and even other whales

VIDEO: B.C.’s waving granny gets incredible send-off from school kids

Tinney Davidson has been waving at students on their way to school for over 11 years, but is moving in a month

Struggling B.C. adoption agency elects new board that intends to keep it open

The previous board announced that Choices would close May 31

Woman, 60, charged in connection to thefts at YVR

RCMP believe the foreign national is part of a larger organized theft group

Vancouver man, 19, charged in human trafficking case involving teen girl

The 16-year-old girl was reported missing and later discovered in Vancouver

Worst 10 bus routes in Metro Vancouver for rider complaints

TransLink releases list, with Route 319 at the top

VIDEO: Highway One to be widened east to 264th Street in Fraser Valley

The $235 million project includes upgrades to overpasses and a rail bridge

Most Read

l -->