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Boy with extremely rare skin condition dies at U of M hospital

Jonathan Pitre was just 17 years old.

A boy afflicted with an extremely rare and painful skin disease has sadly died from complications following treatment at the University of Minnesota.

Canadian Jonathan Pitre had been dubbed the "butterfly child" because of the sensitivity of his skin was akin to a butterfly's wings, CBC reports.

It was the result of a condition called epidermolysis bullosa (EB), a little known disease that people are now becoming aware of because of his brave battle.

On Friday, his mother, Tina Boileau, confirmed that her son had died at the age of 17.

"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," she wrote on Facebook. "I am proud to say you did it Jonny boy!

"Thank you for your outpouring of love and support for Jonathan and myself in these sad times. My family and I are now requesting your understanding in respecting our privacy as we reunite as a family to support each other in the challenging days ahead as we grieve the loss of our son, brother, grandson and above all a fearless warrior."


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He was being treated at the University of Minnesota Masonic Children's Hospital, where the Ottawa Citizen reports he underwent a stem cell transplant last April in an attempt to halt the disease's advance.

The newspaper says that Pitre suffered a series of complications and medical issues in the wake of the transplant, which was preceded by "intense" chemotherapy and radiotherapy.

The U.S. National Library of Medicine says EB is a group of genetic conditions that cause the skin to be very fragile and blister easily, with skin erosions forming from minor injuries or scrapes, such as rubbing or scratching.

The U of M is the world leader in offering therapy for EB, conducting experimental clinical trials on sufferers that includes stem cell therapies and bone marrow transplants.

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