‘Butterfly’ boy’s skin falls off at the slightest touch due to rare disease, raises $100,000 to find a cure


This boy has a rare genetic disease that causes him to lose his skin with the slightest touch and causes intense pain through the day and night. At such a young age, and with such a burden, he still makes the best of life and tries to live every moment fully.

Jonathan Pitre, 14, suffers from epidermolysis bullosa, a serious disease that causes skin to fall away and blister with even a slight touch, looking similar to severe burns. This condition leaves him in constant pain. Children with this condition are referred to as “butterfly children” as they are so fragile.

“Every day, even when I’m sleeping, I feel pain. I have that little part of me that’s conscious when I sleep and sometimes I wake up because it hurts so badly,” he said, in a report by Barcroft TV.

Youtube Screenshot | Barcroft TV

Even holding a knife or buttoning his shirt can be a source of severe pain. The wounds on Jonathan’s skin make him susceptible to skin cancer and he has to have systematic surgeries to open up his hands and fingers that can fuse together with layers of skin.

Youtube Screenshot | Barcroft TV

Taking care of Jonathan is a challenge for his mother, Tina Boileau, who has to wrap his whole body in bandages to stop infections.

YouTube screenshot | Barcroft TV

“It’s hard work seeing your child in pain every day,” she said. “You know you’re hurting him and you can’t stop, you have to keep going. Every time a wound doesn’t heal, or there’s a bigger wound, or it gets deeper, you’re always concerned the cancer is going to get in there.”

Youtube Screenshot | Barcroft TV

Unfortunately, Jonathan’s social life suffers due to the disease. He said: “Its very hard to make friends with people just because of the everyday routine. I would never be able to hang out with them; the only time would be at school. At lunch I can’t go in the cafeteria because there are too many people and too many chances to get hurt so it is very hard to make friends.”

Youtube Screenshot | Barcroft TV

However, despite all suffering and daily pain that Jonathan goes through, he manages to maintain a positive mindset and still wants to do something good for the world.

Youtube Screenshot | Barcroft TV

He is the ambassador of the EB charity DEBRA Canada and has raised more than $100,000 to find a cure for the disease. He has also plans to make a trip to see the Northern Lights, as for him they represent the friends he has met, who have lost their fight with EB. Sufferers of EB usually live to only about 25 years old as their condition gradually deteriorates.

Youtube Screenshot | Barcroft TV

The disease has made Jonathan grow up quickly and have a more mature outlook on life.

He said in the video: “I always wanted to see them [Northern Lights], before even I made the connection with the EB children and the Northern Lights. It’s just so beautiful to see it, to see the lights dancing in the sky. That gives me a sense of hope, that one day we will be free of pain. I will stop having limitations, I’ll be able to do whatever I want.”

Youtube Screenshot | Barcroft TV

“That’s why you should not always think about you don’t have. Think about what you do have. Think about all the happiness around you, think about all the love. Don’t think about the negative stuff, think about the positive and you will be a happy person,” he added.

Jonathan’s positivity in adversity is truly inspiring.

Watch the video below…