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

Ex-cop now preaches importance of prison programs at Abbotsford prison

John Glena once advocated throwing away keys for offenders; now he works to improve their lives

Nowhere to grieve: Processing loss on Abbotsford’s streets

Homeless advocate Harvey Clause says grief has distinct challenges for those living on the streets

Your daily commute and weather forecast: Mar. 21, 2019

Potential to crack one final temperature record today before dipping down into the mid-teens

Abbotsford Atom C2’s win local rec hockey tournament

Abbotsford C2’s go undefeated at Atom Rec event over the weekend

Abbotsford woman charged after police find loaded gun in bag at mall

Danielle Rigdon, now facing 11 charges this year, was on house arrest at the time

After mosque attacks, New Zealand bans ‘military-style’ guns

The gunman killed 50 in a Christchurch mosque

ICBC shifts to Alberta model, with higher rates, private insurers say

Minor injury cap, court restrictions take effect April 1 in B.C.

B.C., feds accused of ‘environmental racism’ over Site C, Mount Polley

Amnesty International Canada says governments failed to recognize threats to Indigenous peoples

New Leger polls suggests federal Liberals lagging Conservatives

Overall, 31 per cent of respondents polled said they would vote for Justin Trudeau’s Liberals

Two men charged in Lower Mainland grocery store stabbing in 2018

Coquitlam RCMP say the incident is ‘believed to be targeted’

Number of homeless deaths more than doubled in B.C. as opioid crisis set in

New data shows trend between more overdose deaths and the number of people dying in the street

Four people spat on in ‘random, unprovoked’ assaults: Vancouver police

Police ask additional victims to come forward after woman in a wheelchair spat on

Driver sought in Vancouver hit-and-run that sent two to hospital

A man and woman were crossing Fraser Street early Monday morning when they were hit

Most Read