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

Theft at Mt. Timothy latest challenge for local ski hill

Society president Mike Kidston still hoping local politicians will support referendum on funding

Age-Friendly Society hosting stress and anxiety presentation in 100 Mile House

Psychologist Kristin Buhr will be teaching strategies to deal with stress and anxiety

A decrease in locally written letters to the editor is significant

The weekly editorial for the 100 Mile Free Press

A case for the Penguins

A weekly sports column by the 100 Mile Free Press

Festival of the Arts to start April 23

“People should expect to hear a lot of young talent”

REPLAY: B.C. this week in video

In case you missed it, here’s a look at replay-worthy highlights from across the province this week

How to keep local news visible in your Facebook feed

Facebook has changed the news feed to emphasize personal connections. You might see less news.

Dix says B.C. remains focused on fighting youth overdoses in wake of teen’s death

Elliot Eurchuk’s parents say he died at his Oak Bay home after taking street drugs

Final week for ALR input

Public consultation process closes April 30

‘When everybody leaves: Counselling key to help Humboldt move on after bus crash

Dealing with life after a tragedy can be the worst part following a loss

Half-naked shooter guns down four, runs away in Nashville Waffle House shooting

Nashville police say they are looking for Travis Reinking in connection with the shooting

Child’s body found in river downstream from where boy went missing during flood

Three-year-old Kaden Young was swept out of his mother’s arms in February

B.C. VIEWS: Eliminating efficiency for farm workers

Don’t worry, NDP says, the B.C. economy’s booming

B.C. student makes short-list for autism advocacy award

Brody Butts honoured for his role as a mentor and self-advocate

Most Read