A boy who suffered one of the most painful conditions in the world has died, at the age of 17.
Pitre suffered from a skin disease, which is referred to as epidermolysis bullosa (EB), and lived with excruciating pain, blistering from the lightest touch.The teen, who died on Wednesday (April 4), was one of only 17,000 people on the planet to suffer from the condition, described as one of the most painful in the world.
The teen, who died on Wednesday (April 4), was one of only 17,000 people on the planet to suffer from the condition, described as one of the most painful in the world.
As a toddler, the boy wasn’t able to crawl because it ripped the skin from his legs.
Following the news of the boys death, Canadian Prime Minister, Justin Trudeau posted a heartfelt message on Twitter.
Join DEBRA Canada on May 27-28 for the Ottawa Race weekend. Support 🦋children https://t.co/JwddkXW1v9#runScotia pic.twitter.com/nEXRnyFzIn
— Jonathan Pitre (@pitrej02) March 21, 2017
Writing:
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.
Jonathan’s mother, Tina Boileau, just said
“I can’t imagine my life without him. He’s no longer suffering and that’s what he wanted. That’s what I wanted.”
Jonathan died at a hospital in Minnesota, after he had to be admitted because of a fever on the Friday before.The boy had suffered similar fevers in the past which were ‘brought on by the stem cell transplants’ which were carried out in to alleviate his pain.
The boy had suffered similar fevers in the past which were ‘brought on by the stem cell transplants’ which were carried out in to alleviate his pain.
Tina said:
He was all happy-go-lucky and looking forward to getting out. We figured it was just his infection working. We’d been down this path before.
On Saturday, his blood pressure dropped, but he was ‘still eating and in good spirits’.Sadly, on Sunday, his blood pressure had dropped even further and on Monday, his breathing began to fail and sepsis set in.
Sadly, on Sunday, his blood pressure had dropped even further and on Monday, his breathing began to fail and sepsis set in.Despite the condition, Tina was able to do fun things for him – taking him bicycling, go-karting, even ice-skating, and despite coming away with ‘giant blood blisters, he never complained’.
Despite the condition, Tina was able to do fun things for him – taking him bicycling, go-karting, even ice-skating, and despite coming away with ‘giant blood blisters, he never complained’.Tina described him as ‘living in his imagination’, and said he was a ‘devoted fan of science fiction’. He was writing his own book of science fiction when he died.
Tina described him as ‘living in his imagination’, and said he was a ‘devoted fan of science fiction’. He was writing his own book of science fiction when he died.In 2012, Jonathan ‘realised his purpose’ when he attended an EB conference in Toronto. It was the first time he’d met other children who were suffering
In 2012, Jonathan ‘realised his purpose’ when he attended an EB conference in Toronto. It was the first time he’d met other children who were suffering with the same disease as him.
Following this, he told Ottawa Citizen:
I think that was a turning point in my life. Before that, I didn’t really have meaning in my life. I didn’t know what I was here for …
I came to understand that my role in life was to help people with EB.
What a hero. Rest in peace, Jonathan.
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