Boy known as 'the Butterfly' for his rare and excruciatingly painful skin condition has died

Edduin Carvajal
Apr 11, 2018
12:52 P.M.
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Even though there are many painful illnesses in the world, not all of them are as painful as the one Jonathan Pitre, known as the Butterfly Child, had.


It is called Epidermolysis Bullosa (EB) and it is a rare condition that makes the patient’s skin as fragile as butterfly wings. The slightest scratch often causes painful blisters that take longer than expected to heal.

According to Daily Mail, Pitre passed away on April 4, 2018, at the age of 17. His condition was first addressed by a local newspaper in Ottawa, Canada, in 2014 and it soon spread on the Internet.

He confessed that he had never experienced a pain-free moment, not even while he was asleep. Despite the illness was clearly debilitating him, he spent his last years raising awareness for EB.


His efforts helped raise more than $200,000 for Debra, a charity for families of people with that disease. As soon as the world learned that he had passed away, they took to their social media accounts to share their condolences.

Canadian prime minister, Justin Trudeau, was one of them as he tweeted that Pitre was a true hero as he was a courageous and determined fighter who inspired many people.

The same source revealed that Pitre was one of the less than 17,000 cases of people with EB in the world. Normally, there are three layers of skin that cover the muscles and bones.


Pitre was born without the one in the middle, which is in charge of holding the inner and outer layer together. Even the smallest trauma would create a deep and painful wound that would take forever to heal.

'It's called one of the worst diseases known to modern medicine for a reason. The worst disease you've never heard of. If you live with this, you have to be strong. And if you're not yet, you will become it. You have no choice.'

Jonathan Pitre, Daily Mail, April 9, 2018.

Since there is no cure for that condition yet, he was expected to live until he was 25 years old. After trying an experimental stem cell transplant, he got infected. The family went to the hospital on March 30, but his condition never improved until his death, four days later.