Jonathan Pitre readies for his second stem cell transplant, which will take place April 13 at the University of Minnesota Masonic Children's Hospital. Photo Courtesy: Debra Canada
(KMSP) - A 17-year-old Canadian boy, known as the "Butterfly Boy," whose battle with a painful skin disease inspired many and helped raise awareness, passed away at a Minnesota hospital Wednesday evening, according to Debra Canada, a charity he worked closely with.
Jonathan Pitre had epidermolysis bullosa (EB), a disease which causes the skin to blister at the slightest touch. Since his skin was as fragile as a butterfly, he developed the nickname "Butterfly Boy." He spent his life raising awareness for EB, working with groups like Debra Canada, where he became one of their EB ambassadors.
According to the Ottawa Citizen, Pitre had been battling an antibiotic-resistant skin infection and went to the University of Minnesota Masonic Children's Hospital for treatment last week. Wednesday night he died of sepsis.
Pitre's mother, Tina Boileau posted an announcement on Facebook, celebrating his efforts to create more understanding for the disease.
"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," Boileau wrote on Facebook. "I am proud to say you did it Jonny boy!"
Pitre gave the "Let's play hockey!" chant at a Minnesota Wild game on March 30, 2017 alongside the Canadian Consul General Khawar Nasim. Pitre was a big fan of the Ottawa Senators.