Ottawa boy Jonathan Pitre dead at 17 from rare skin disease

Ontario teen Jonathan Pitre, whose determination in the face of a rare and painful skin disease served as an inspiration as he worked to raise awareness about it, has died.

Russell, Ont., resident was in U.S. for treatment of epidermolysis bullosa

Jonathan Pitre, 17, of Russell, Ont., suffered from epidermolysis bullosa, or EB, a painful and deadly skin disease. Jonathan, who worked diligently at raising awareness of the disease, has died. (Waubgeshig Rice/CBC)

Jonathan Pitre, whose determination in the face of a rare and painful skin disease served as an inspiration as he raised awareness about epidermolysis bullosa (EB), has died at age 17.

Jonathan and his mother, Tina Boileau, from Russell, Ont., just east of Ottawa, had been in Minnesota so he could get treatment for the disease, which causes severe skin blistering.

"Jonny's story has been made very public over the last few years as he invited you into his life and his daily struggles with EB as he tirelessly fought to raise awareness for this horrific disease," Boileau wrote in a Facebook post.

"I am proud to say you did it Jonny boy!"

Kids with EB are often referred to as "butterfly children," because their skin is as fragile as a butterfly's wings.

DEBRA Canada, an organization that supports families dealing with EB and raises awareness about the disease, confirmed Jonathan's death to CBC News.

"All of us here at DEBRA Canada are extremely saddened at the loss of our beloved ambassador Jonathan," said a statement emailed Friday from the organization.

"Jonathan fought long and hard, and was extraordinary at raising awareness for all those affected by EB."

Pitre was known for displaying strength and determination, while fighting a rare skin disease. 0:29

'Part of our family'

Russell Mayor Pierre Leroux also paid tribute to Jonathan.

"He was part of our family," said Leroux.

"To have somebody so inspiring in the community and to hear of his passing, just makes your heart sink."

People in Jonathan Pitre's hometown say they're saddened by the loss of one of the community's most inspiring residents. 1:07

A huge fan of the NHL's Ottawa Senators, Pitre became close with the team after he started sharing his story and spreading awareness about his disease.

The entire team came to visit him in Minnesota last March when they were in the area to play the Wild.

Politicians from across the country added their condolences, including Prime Minister Justin Trudeau.

"Jonathan Pitre was a hero in every sense of the word — a courageous and determined fighter who persisted in the face of every challenge, and who inspired so many," Trudeau tweeted.