'Butterfly Child' Jonathan Pitre Dead at 17
Jonathan Pitre, also known as the 'butterfly child' passed away on Wednesday at a hospital in [...]
Jonathan Pitre, also known as the "butterfly child" passed away on Wednesday at a hospital in Minnesota. He was 17 years old.
Pitre was born with epidermolysis bullosa, a rare condition that makes his skin extremely fragile and easy to blister. Pitre, as well as other with the condition, earned the "butterfly" nickname due to their skin being as delicate as the insect's wings.
Pitre and his mother Tina Boileau originally lived in Ottawa, Canada, but had come to the United States to seek treatment for his symptoms. There is no cure for the disease, people with it rarely live past the age of 30 and there are many as 50,000 people with the disease in the United States according to the National Epidermolysis Bullosa Registry.
During his life, Pitre worked tirelessly to help raise awareness about the condition. Boileau took to Facebook on Friday and wrote a heartfelt message to him and the people who have reached out to her in the past few days.
"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!" Boileau wrote.
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.
"Thank you for your understanding and continued support," she concluded in a message written in both English and French.
DEBRA Canada, an organization that supports families with members affected by the disease as well as aiding in raising awareness, released a statement on Pitre's passing to CBC News.
"All of us here at DEBRA Canada are extremely saddened at the loss of our beloved ambassador Jonathan," the organization wrote in a statement. "Jonathan fought long and hard, and was extraordinary at raising awareness for all those affected by EB."