A 17-year-old boy from Ottawa, Canada has died due to complications from a genetic skin disease.
Jonathan Pitre, who suffered from epidermolysis bullosa, had skin as fragile as a butterfly’s wings. This made him prone to blisters and wounds even with the slightest touch. Children who have this condition are often called ‘butterfly children’ and Jonathan wanted to bring awareness and raise funds for the excruciating disease.
His story went viral in 2016 when he opened up to an Ottawa paper how he never had a pain-free life, even during his sleep. In an ESPN segment called Butterfly Child: Jonathan Pitre, he expressed how EB was one of the worst diseases you’ve never heard of.
He became the face of EB and was able to raise more than $200,000 for families of people with the disease.
Canadian Prime Minister Justin Trudeau made a statement on his Twitter saying how Jonathan was a fighter who persisted in the face of every challenge.
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. https://t.co/JqqljEyJYz
— Justin Trudeau (@JustinTrudeau) April 6, 2018
Jonathan was not expected to live past 25 or until a cure was discovered. Last year, he underwent an experimental stem cell transplant to reduce symptoms of the disease, but he had been in and out of the hospital due to infections.
On March 30, Jonathan was hospitalized due to an antibiotic-resistant skin infection. He experienced a drop in his blood pressure and was starting to have difficulty breathing. He was moved to the intensive care unit but his condition continued to worsen.
On April 4, his mother decided to bring him back to his familiar hospital room where Jonathan died that night.
The teen was more than just the face of EB, he loved hockey and gym class even when it was difficult for him to live an ordinary life. He also loved reading science fiction and was working on his own book when he died.