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

Cranbrook RCMP respond to fatal canoe incident at Moyie Lake

A young man died after a canoe overturned in the lake early Tuesday morning

Plenty of misinformation spreading on Draft Caribou Plan, Wildsight says

The environmental group Wildsight is advocating for the proposals put forward in… Continue reading

MLA Report: Caribou Recovery – Regrets and Regression

Doug Clovechok, MLA Columbia River - Revelstoke Last week, the residents of… Continue reading

News from the Kimberley Garden Club

Submitted by Marilee Quist At our April 16th, we met at the… Continue reading

Special Olympic athletes work on public speaking

The Kimberley/Cranbrook Special Olympics had two athletes build up their public-speaking skills

VIDEO: ‘Alarm bells’ raised by footage allegedly from B.C. pig farm, SPCA says

PETA released video Wednesday showing dead and injured piglets next to nursing piglets

B.C. youth coach banned amid sexual harassment, bullying scandal: Water Polo Canada

Justin Mitchell can’t take part in Water Polo Canada events or clubs

Wilson-Raybould: Feds want to just ‘manage the problem’ of Indigenous Peoples

Former federal justice minister speaks at First Nations Justice Council meeting in B.C.

VIDEO: Driver in bizarre hit-and-run at B.C. car dealership turns herself in

Police believe alcohol was a factor in incident causing estimated $15,000 in damages

Female real estate agents warned of suspicious man in Metro Vancouver

The man requests to see homes alone with the female agent, police say

Can you put your phone down for Mother’s Day?

#DiningMode campaign encourages people to leave the phone alone while eating

Horgan heckled as gas prices sit at record high, could go up more

Premier John Horgan blames refiners, not taxes

SPCA investigating after newborn kittens found in Vancouver dumpster

The kittens were found suffering from hypothermia and dehydration

‘B.C. cannot wait for action’: Top doctor urges province to decriminalize illicit drugs

Dr. Bonnie Henry says current approach in ‘war on drugs’ has criminalized and stigmatized drug users

Most Read