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

Former Times editor outlines his election platform

Keith McNeill officially in the running

Declaration of candidates is in

List of those running for mayor and council firmed up

Municipal spending outpaces population growth 4-fold in B.C.: report

Canadian Federation of Independent Business has released its annual operational spending report

Public remided to use caution in areas burned by wildfires

Post-wildfire areas have own set of hazards

64 cats seized from ‘bad situation’ now in BC SPCA care

The surrender is part of an ongoing animal cruelty investigation with BC SPCA Special Constable

Young people need us to act on climate change, McKenna tells G7 ministers

Catherine McKenna led off the three-day Halifax gathering Wednesday

B.C. woman facing animal cruelty charges after emaciated dog seized

Kira, a Rottweiler, had kidney and bladder infections

Kim agrees to dismantle main nuke site if US takes steps too

Kim promised to accept international inspectors to monitor the closing of a key missile test site and launch pad and to visit Seoul soon.

Dozens speak at Vancouver hearing that could see duplexes replace single homes

The city clerk says 73 people signed up to speak at the hearing that began early Tuesday evening and adjourned hours later with 34 speakers still waiting.

North Carolina gov pleads with storm evacuees to be patient

The death toll rose to at least 37 in three states Tuesday, with 27 fatalities in North Carolina.

North and South Korea say they plan to bid for 2032 Olympics

Moon and Kim announced a sweeping set of agreements including a vow to work together to host the Summer Olympics in 2032.

Russia’s reinstatement after doping scandal goes to a vote

The World Anti-Doping Agency is due to vote Thursday Sept. 20, 2018, on possible reinstatement of Russia.

Ontario wins stay on ruling that struck down council-cutting plan

The province had argued the stay was necessary to eliminate uncertainty surrounding the Oct. 22 vote, and the Court of Appeal agreed.

Most Read