Warning: Some of the imagery in the videos are graphic.
A Canadian boy who suffered from a rare skin condition and was dubbed by the media was dubbed the “Butterfly Child died more than a year ago. His mother recently posted a tribute to him on his birthday.
In June, his mother, Tina Boileau, wrote for her son, Jonathan Pitre: “I am sending you my birthday wishes on the wings of a butterfly with the hope that it carries my love wherever you are, not only for today, but every day hereof! I wish that you get to see the Northern Lights and that they are as beautiful as you imagined them. I wish that you play hockey every day. But most of all, I wish that you are finally free of pain. For you, my beautiful boy, the sky is no longer the limit…”
Over the years, Pitre’s story has been the subject of international news reports, having been diagnosed with recessive dystrophic epidermolysis bullosa (RDEB), which causes external and internal blistering across the body.
Determination
Pitre, according to CTV News, had to have daily dressing changes, but he spent his time raising awareness about the rare disease.
Russell fundraiser to remember Jonathan Pitre https://t.co/jpssBYxt5q pic.twitter.com/90TQdgepKA
— Ottawa Citizen (@OttawaCitizen) March 8, 2019
“It’s called one of the worst diseases known to modern medicine for a reason,” Pitre said in a TSN segment, “ The Butterfly Child.” “The worst disease you’ve never heard of.”
According to Insider, despite the pain, he was determined to stay positive and raise awareness about the condition. He often spoke publicly and privately to children with the disease.
“I’m in constant pain and most of the time, I’m limited to my wheelchair, but that’s the last negative thing you’re going to hear from me,” Pitre said. “Instead, I’m going to share my dreams with you.”
Meanwhile, Pitre had raised more than $200,000 for DEBRA, a charity for children and families who are affected by EB, the Ottawa Citizen reported.
Despite his death, Pitre’s story will continue to inspire others and provide some hope for others with the condition, reminding them they aren’t alone.
“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,” Prime Minister Justin Trudeau tweeted about the boy.
What Is EB?
According to DEBRA.org, the disorder affects 1 in 20,000 births in the United States.
“There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30,” the website says.
