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

Surrey Students NOW slate plans SOGI info session

Event aims to to ‘address concerns and misinformation about the resource being used in our schools’

Surrey First vows to create ‘Mayor’s Youth Council’ if elected

Youth ages 16 to 24 would ‘weigh in’ on decisions regarding everything from affordable housing and transit, to recreation programs and public safety

Another Surrey mayoral candidate wants to ‘pause’ LRT plans

Hayne and his Integrity Now team join other candidates who aren’t sold on the city’s light rail plans

Teen stabbed at Surrey’s Unwin Park

17 year old was transported to hospital with non-life-threatening injuries

Cloverdale CHAMP celebrates War Amps on its 100th anniversary

Child Amputee Program provides financial and peer support

Ottawa area residents take stock of tornado rubble as Ford tours the ruins

A tornado on Friday afternoon tore roofs off of homes, overturned cars and felled power lines in the Ottawa community of Dunrobin and in Gatineau, Que.

Cap rent increases at inflation rate, B.C. task force recommends

MLAs say drop annual increase that would allow 4.5% rise next year

School, church and old mining site make Heritage BC’s 1st ever ‘watch list”

The list includes sites in need of protection to maintain B.C.’s culture and history

5 to start your day

Maple Ridge students send books to fire-destroyed school, teen stabbed in Surrey park and more

Yowza! Twerk, emoji and facepalm are added to Scrabble dictionary, OK?

Merriam-Webster has announced 300 new words have been added to the spelling game

LGBTQ activists, allies in Victoria counter anti-SOGI protest with rally of their own

Lower Mainland activists plan to protest SOGI on legislature lawn, Sept. 29

Three people attacked on Queensborough Bridge

Man in custody following incident occurred Sunday

Cities make power play for new fiscal order with eye to 2019 federal election

Trudeau ordered Champagne to talk with provinces and territories about ways to “address the timeliness of the flow of funds” to projects.

Trudeau arrives at United Nations, hoping to re-establish Canada on world stage

Trudeau is beginning his day at the opening of the Nelson Mandela Peace Summit, where he’s scheduled to deliver brief remarks later this afternoon.

Most Read