Though He May Only Live To Be 25, This Boy Spends His Time Raising Awareness About His Rare Genetic Condition

He's known as the "Butterfly Boy."

For most of us, it's hard to imagine a reality where every single day is spent maintaining our health and managing pain. But for 14-year-old Jonathan Pitre, it's hard to imagine life otherwise. 

Pitre suffers from a rare genetic disease known as epidermolysis bullosa simplex or EB. The condition causes almost all the skin covering his body to be very fragile, blister and even fall off with just a slight touch. Over the years, Pitre's bigger and deeper wounds have become chronic, meaning they will never leave his body. 

Every single day, the boy from Russell, Canada works to overcome challenges most people take for granted — like getting dressed, walking and eating.  And with the help of his mother, Tina Boileau, 35, Pitre spends the majority of his time wrapping his skin in bandages to protect from infection, soaking in baths to tend to the wounds, managing nausea and headaches and keeping up with medications. He, and others like him, are so fragile, in fact, they are known as "butterfly children." 

But despite his hardships, Pitre still makes time to raise awareness about his disease through DEBRA Canada, an EB organization. In a video interview with Barcroft TV, Pitre's sister Noemy says, "I find him very very very very inspiring. I can't imagine anyone else being able to bring so much awareness at his age."  


On why he wants to be an ambassador for this cause, Pitre says: "It means a lot to me. It means I can make a difference and help people." &v=kFV5tjo80QQ

Just sharing his story has already done so much. An article featuring Pitre and DEBRA Canada went viral on the Ottawa Citizen, being viewed around 600,000 times.

Donations started to roll in, and effectively, Pitre helped raise $117,000 for DEBRA in just three months. 

Ottawa Citizen notes "There is currently no cure for the disease, though he hopes to change that." —Especially given that doctors have told Pitre he is likely to only live to be 25 years old. In Barcroft's video his mother says, "Jonathan and I have very deep conversations about the possibilities, and everything that can happen. We all die — and some sooner than others — he's kind of accepted it, but at the same time he's never been much of a quitter..."

"...he won't just accept the fact that this is supposed to be his life, he will try, and he will fight to make sure that he surpasses the odds." &v=kFV5tjo80QQ

Pitre finds joy in the little things in life, and knows he must make the most of his time. One of his goals, however, is to visit the Northern Lights — A place he finds special meaning in, as he connects the dancing lights to the friends he has lost to EB. He says, to him, the lights  represent a sense of freedom from the pain and a life without limitations.  

"I only have a lifespan until 25 years old. I'm already past half my life. So, when you think about that, it gives you new perspective. That's why you should live life to your fullest."

Watch the full video below to learn more about Pitre's story and EB:

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