Ottawa teenager Jonathan Pitre, who was known as the “butterfly boy,” because of a rare skin condition, has died.
Pitre, 17, passed away Wednesday evening in a Minnesota hospital, according to TSN and the Ottawa Citizen.
Pitre was born with epidermolysis bullosa (EB), a rare but debilitating condition that made his skin extremely fragile and prone to blistering. People with the condition are sometimes called “butterfly children” because their skin is as fragile as the insect’s wings.
It affects between 3,000 and 5,000 Canadians. There’s no treatment for the disease and people with is rarely live beyond 30 years.
Pitre’s mother, Tina Boileau posted about his death on Facebook Friday morning, thanking everyone for their love and support.
“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. I am proud to say you did it Jonny boy!” she posted.
WATCH: Young butterfly boy hopes to make difference for others with same disease
In 2016, Pitre and his mother, Tina Boileau, traveled to Minnesota so he could undergo stem cell treatment — an experimental clinical trial that was said to be dangerous and painful, but also potentially life-saving.
Since the treatment, he had been in and out of the hospital.
But on Friday, Pitre was admitted back in the hospital due to a high fever, according to the Ottawa Citizen. Over the next few days, his blood pressure kept dropping and his condition deteriorated.
He was then moved to the intensive care unit and died Wednesday evening.
“He’s no longer suffering and that’s what he wanted,” Boileau told the Ottawa Citizen. “That’s what I wanted.”
WATCH: ‘Butterfly boy’ overjoyed after experimental treatment
‘One of the bravest people I had the honour of meeting’
On Friday morning, many Canadians took to social media to pay their respects to Pitre.
Prime Minister Justin Trudeau said Jonathan, “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. My deepest condolences to his mother Tina, friends and family today.”
Ottawa Mayor, Jim Watson posted an image of the 17-year-old saying, “Very sad to hear about the passing of Jonathan Pitre. One of the bravest people I had the honour of meeting. Rest In Peace.”
Charles Bordeleau, chief of the Ottawa Police Service expressed his condolences. “An example to many how to live and appreciate life,” he said about Pitre.
Canada’s Minister of Environment and Climate Change, Catherine McKenna, tweeted, “Although he has left our community far too soon, the wave he created will keep going.”
Pitre was also a massive Ottawa Senators fan and was even an honourary scout for the team.
“The Senators join the rest of Ottawa and mourn the loss of your special friend. He taught us what courage and resilience really is, all the while displaying his trademark enthusiasm and smile. We’ll all miss you Jonathan” the team tweeted.
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