17-Year-Old 'Butterfly Child' with Rare Skin Disease Dies: He Was a 'Fearless Warrior,' Mom Says
Epidermolysis bullosa is a rare disease causing his skin to blister in response to minor stimuli such as scratching or heat.
A Minnesota teen who made headlines for his rare and painful skin disease died on Wednesday in Minnesota. He was 17.
Jonathan Pitre was known as “Butterfly Child,” as he was diagnosed with Epidermolysis bullosa, a rare disease causing his skin to blister in response to minor stimuli such as scratching or heat. The condition leaves the skin as fragile as a butterfly’s wings. The Canada teen died of complications from septic shock, the Ottawa Citizen reports.
Jonathan’s mother, Tina Boileau, honored her son in a Facebook post on Friday, calling him a “fearless warrior.”
“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. “I am proud to say you did it Jonny boy!”
Jonathan inspired many as he vowed to overcome the illness, and he even raised funds for the EB charity DEBRA Canada, according to the publication. His story went viral about two years ago, and Jonathan’s story was even featured in an ESPN E:60 segment called The Butterfly Child.
In the segment, Jonathan revealed that, because of his disease, he has “never” had a pain-free moment.
“It’s called one of the worst diseases known to modern medicine for a reason. The worst disease you’ve never heard of,” he said at the time. The slightest scratch or blistering can result in wounds comparable to third-degree burns.
“If you live with this, you have to be strong. And if you’re not yet, you will become it. You have no choice.”
His mother added to E:60: “Jonathan is in constant pain. He wakes up with pain and goes to bed with pain. It’s in our lives forever. All the time.”
On Friday, Canada’s prime minister Justin Trudeau honored Jonathan in a tweet.
“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,” he wrote. “My deepest condolences to his mother Tina, friends and family today.