Justin Trudeau Leads Tributes To Canadian Boy Who Passed Away From Rare Skin Disease

A Canadian boy who died from a rare genetic condition has been described as a hero by Prime Minister Justin Trudeau.

Jonathan Pitre has passed away at the age of 17 from a skin disease, epidermolysis bullosa, which causes the skin to have the strength of a butterfly's wing and can cause excruciating pain and blistering from even the lightest touch.

Jonathan was one of only 17,000 people in the entire world who suffered from the condition, which has been described as one of the most painful in the world.

He was active in raising awareness of the disease and is thought to have raised over $200,000 (£141,000) for charities that search for a cure. Currently there is no cure for the disease and Jonathan was only ever expected to live to the age of 25.

Facebook/Jonathan Pitre

He had suffered from EB since birth. Jonathan almost died immediately, having to undergo incubation, but was saved by doctors.

As a toddler, he could not crawl, as it tore the skin from his legs, and his mother became an expert in dressing his many skin wounds. He was an exceptional student at school, but was unable to participate in any sporting activities and lived through extreme pain almost all day.

As Jonathan grew up, he became a poster child for his condition, helping millions to understand what is one of rarest skin diseases in the world.

"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. My deepest condolences to his mother Tina, friends and family today," wrote Justin Trudeau, Prime Minister of Canada, on Twitter.

Jonathan's mother, Tina Boileau, had been at his side throughout his media appearances and said simply: "I can't imagine my life without him."

He died at a hospital in Minnesota, just over the border into the United States, where he had been admitted after a fever on Friday.

He had suffered similar attacks in the past, brought on by the stem cell transplants that he had undergone in an attempt to alleviate the pain of his condition, and there had not been any particular worries about his condition.

"He was all happy-go-lucky and looking forward to getting out," said his mother. When his blood pressure fell on Saturday, doctors still did not suspect that anything was awry.

"We figured it was just his infection working. We had been down this path before," added Tina.

However on Sunday his blood pressure dropped further and on Monday, his breathing began to fail and sepsis set in, causing the medics to move Jonathan to intensive care.

His lungs and kidneys began to fill with fluid and TIna made the decision to bring him back to bed. He passed away on Wednesday evening. "He's no longer suffering and that's what he wanted," said is mother. "That's what I wanted."

Topics: World News, News, Fundraising, Health

Mike Wood

Mike Meehall Wood is a freelance journalist and translator. He writes for LADbible, VICE and countless sports publications, focusing on rugby league, football and boxing. He is a graduate of Leeds University and maintains a fizzy pop obsession. Contact Mike at [email protected]