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

We are not closed: Salvation Army addresses rumours

Prince Rupert charity issues press release that its still open, offering hot meals six days a week

Vehicle fire extinguished at Rushbrook Floats

Fire crews say there were no injuries in the incident

Terrace users on Facebook post warnings about vehicle break-ins

RCMP say it’s important to always lock your doors

B.C’s salmon advisory council to visit Rupert and skip Terrace

Public engagement tour excludes all non-coastal communities

Oil tanker ban to be reviewed by committee

Indigenous groups for and against Bill C-48 travel to Ottawa to influence the Senate’s decision

This Week News Show – Episode 115

Highlights from this week in Prince Rupert

Shop Prince Rupert is back

These businesses are all taking part in the Shop Prince Rupert event until December 21 at noon

Sissons scores OT winner as Predators beat Canucks 4-3

VIDEO: Vancouver battles back to earn single point in Nashville

Lions announce seven members of coaching staff not coming back for 2019

The operational moves come two days after the Lions announced DeVone Claybrooks as the team’s new head coach

$12K awarded to atheist family who oppose Christmas, Hanukkah in B.C. classroom

Gary Mangel,May Yasue said holidays, Remembrance Day and Valentine’s Day not appropriate in preschool

Coach accused of sexual assault says apology letter was misinterpreted

Dave Brubaker has pleaded not guilty to one count of sexual assault and one count of invitation to sexual touching

Give the gift of nature this holiday season

Please don’t be mad, but I bought you a moose

Aboriginal poet faces backlash for calling out NHL-themed totem poles

Rebecca Thomas says she received backlash for asking a drugstore chain to remove NHL merchandise

No plans yet for free WiFi on BC Transit buses

BC Transit says they are monitoring the roll-out of free WiFi on Translink vehicles

Most Read