Canadian Boy With Skin As Fragile As Butterfly Dies Aged 17
On 14th April 2018
This Canadian boy who has been suffering from a painful skin disease has passed away aged 17. Jonathan Pitre was famous for his courage and devoted his life to creating awareness and collecting funds for the debilitating families who had been affected by this monstrous disease. Several hockey players and Canadian Prime Minister, Justin Trudeau paid tribute to the young warrior who passed away at such a young age.
#1 "The Butterfly Child"
The Canadian boy, also known as the "Butterfly Child" has died aged 17, following the complications from his skin disease. Jonathan Pitre was born with a rare genetic disorder, Epidermolysis bullosa (EB). This disease is considered as the most painful disease in the world with no cure so far, in this condition even a slight scratch to the skin cause traumatic painful blisters which do not heal.
#2 Children With EB Suffers From Excruciating Pain Throughout Their Lives
Jonathan Pitre was one of the 17,000 butterfly children who suffer from this unbearable disease, in which unlike the healthy person who has three layers of skin, these kids do not have the middle layer that holds the inner and outer layers. As a result, even the slightest trauma to the skin causes blisters that cause excruciating pain and do not heal. The life expectancy of these kids is mostly 25 years. The only thing that kept Jonathan surviving all through these years was protective bandaging and daily wound care.
#3 Jonathan Had Great Courage, During His Life He Devoted His Life To Create Awareness About The Disease
Jonathan became famous for his bravery 2 years ago, when the butterfly child opened up about his disease to a local paper in Ottowa, Canada. The teenager revealed that he never for once had a pain free moment in his life, no even when he slept. Jonathan even though was suffering from the painful disease but the young boy had great courage and even during his pain, Jonathan devoted his life to creating awareness regarding his disease and collected over $200,000 for affected families. The young teenager will always be remembered as the face of EB.
#4 Justin Trudeau Paid Tribute To The Young Chap
Canadian Prime Minister Justin Trudeau along with others paid tribute to the young boy, he wrote, "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."
Two years ago, in 2014 Jonathan gave an interview and opened up about his struggles with the disease, he told, "It's called one of the worst diseases known to modern medicine for a reason. The worst disease you've never heard of."
17-year old at the time said, "If you live with this, you have to be strong. And if you're not yet, you will become it. You have no choice."
#5 He Underwent An Experiment Stem Cell Surgery To Give Relieve To His Painful Symptoms
In an attempt to find a cure or at least give relieve to painful blisters, last year Jonathan underwent an experimental stem cell transplant that had the potential to dramatically reduce his symptoms, but since that procedure, he had cycled in and out of the hospital with infections. The teenager's mom, Tina Boileau revealed that her son had been fighting antibiotic-resistant infections for three weeks. Jonathan's condition worsened in March and he was hospitalized on 30 March. Though her son's condition was deteriorating, Jonathon was in high spirits and this kept Tina's hopes high. "We figured it was just his infection working. We had been down this path before."
On April 2 Jonathan's condition worsened, doctors helplessly tried to revert the septic shock but the infection had already started to shut down Jonathan's organs. His kidneys were filled with fluids and his heart stopped. Ultimately, Tina brought her son back to his room in April 4. The 17-year old passed away that night.
#6 Proud Of You Jonny Boy!
Tina took to Facebook to announce the death of her son. She called her son, "fearless warrior." She wrote, "He's no longer suffering and that's what he wanted. That's what I wanted. 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!"
#7 RIP Fearless Warrior!
Jonathan raised over $200,000 for Derba, an organization that supports family's who are affected by this disease. The organization wrote on their social media page, "We are deeply saddened to share the news of the passing of Jonathan Pitre, a true EB champion."
Two National Hockey League teams, the Ottawa Senators and Pittsburgh Penguins, also paid their respects to Jonathan. Jonathan had been a big fan of hockey and gym and was active until his condition allowed him. After his disease worsened he had to stop playing and instead diverted his attention towards sportscasting and coaching.
The butterfly child was famous for his mature mind, which Jonathon mostly attributed to his condition. He said, "Because I can't play sports, I stay with the adults. So I guess I had to kind of grow up faster." Jonathon loved reading science fiction and was even writing his own book before he passed away. Our sincerest condolences to the Boileau family and RIP to the young man. He was indeed a brave soul.