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

Beban Pool closure idea no longer under consideration

Nanaimo city council removes 10 core service review recommendations

Nanaimo RCMP seize suspected stolen bike, look for rightful owner

Anyone missing a Nakamura Monster mountain bike asked to call police

Editorial: Byelection will bring ideas and representation

Nanaimo-Ladysmith will be better served with an MP than with no MP

Rotary gets the go-ahead for a peace garden at Maffeo Sutton Park

Club will fully fund $200,000 project in a corner of the park looking out on Newcastle Channel

First day of sentencing held in Nanaimo hotel murder case

Brandon Woody pleaded guilty to second-degree murder in what Crown council described as ‘execution’

Prime Minister Trudeau comes campaigning in Nanaimo

A day after announcing a May 6 byelection date for Nanaimo-Ladysmith, Justin Trudeau visits city

Harbour Air to convert to all-electric seaplanes

Seaplane company to modify fleet with a 750-horsepower electric motor

Rock group comments on modern love on debut album

Calgary rock group the Northern Coast make Nanaimo debut at the Cambie tomorrow

Candidates hit the campaign trail as Nanaimo-Ladysmith byelection called

Trudeau announces that voters will go to the polls May 6

Howard the giant gnome finds new home on Vancouver Island

Iconic attraction will move from Nanoose Bay to Galey Farms in Saanich

UPDATED: Three dead in Surrey crash: police

Single-vehicle crash occurred around 10:30 a.m., police remain on-scene

Eviction halted for B.C. woman deemed ‘too young’ for seniors’ home

Zoe Nagler, 46, had been given notice after living in the seniors complex in Comox for six years

Is it a homicide? B.C. woman dies in hospital, seven months after being shot

Stepfather think Chilliwack case should now be a homicide, but IHIT has not confirmed anything

Coroner’s inquest announced for Victoria teen’s overdose death

Elliot Eurchuk was 16 years old when he died of an opioid overdose at his Oak Bay home

Most Read