Boy Known As ‘Butterfly Child’, Whose Story Went Viral Several Years Ago, Dies Aged 17

Date April 10, 2018

Jonathan Pitre, a boy with a rare skin disease known as ‘Butterfly child’, passed away on Wednesday, April 4. Jonathan inspired a lot of people, and his sudden demise is a devastating loss for everyone who knows his sad story.

Jonathan Pitre, a boy who inspired millions

Just imagine if you have to live with a constant pain. If you wake up with pain and go to bed with pain every single day. Sound awful, doesn’t it? Jonathan Pitre lived with this feeling for 17 years.

Jonathan suffered from a rare skin condition, which caused his skin to blister in response to minor scratching or heat. His skin was as fragile as a butterfly’s wings, and for this reason, the boy got a nickname ‘Butterfly child’.

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Jonathan’s story has been made very public over the last few years, as he and his mother wanted to raise awareness about this rare disease.



Any tiniest scratch can result in severe and painful wounds for the poor boy. Pitre once said he never had a pain-free moment in his life and his greatest wish was to be just like any other ordinary kid.

RIP, ‘Butterfly child’

On Wednesday, Jonathan’s mother, Tina Boileau, announced some tragic news – her son died of the complications of septic shock. He was 17. The desperate woman shared the news via Facebook post saying:

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!

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A lot of people who knew Jonathan’s story honored the ‘Butterfly child’ with a touching tribute.

Jonathan Pitre was a very brave boy. He inspired millions to face challenges and never give up hope. Rest in peace, ‘Butterfly child’.


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