Boy With Skin As Fragile As Butterfly Wings Dies Aged 17

Ottawa Citizen/YouTube

A boy who suffered one of the most painful conditions in the world has died, aged 17.

Jonathan Pitre suffered from a skin disease, known as epidermolysis bullosa (EB), and lived with excruciating pain, blistering from the lightest touch.

The teenager, 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.

According to the Ottawa Citizen Jonathan couldn’t scratch without tearing his skin, but he dreamed of playing hockey.

Jonathan made himself the ‘face of the disease’ sharing his story online to raise as much awareness and money  for the EB charity as he could.

There’s no cure for EB and Jonathan was only ever expected to live to the age of 25, despite having almost died immediately after birth.

As a toddler, he wasn’t able to crawl because it ripped the skin from his legs.

Following the news of Jonathan’s death, Canadian Prime Minister, Justin Trudeau posted a heartfelt message on Twitter.


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 being admitted because of a fever on the Friday before.

He’d 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, Jonathan’s blood pressure dropped, but he was ‘still eating and in good spirits’.

Sadly, on Sunday, Jonathan’s blood pressure had dropped even further and on Monday, his breathing began to fail and sepsis set in.

Despite his 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 Jonathan 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 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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