He’s as fragile as a butterfly’s wings. (Photo/plixs.com)
He is called a Butterfly Boy. Imagine you are about to meet him.
He walks into a room. You stare at him. You look away. You look again. Questions run through your mind. What do I say? Should I say something? Do I walk away? Do I say hello? What do I do?
Now imagine you are the boy who walks into the room. He knows you are staring at him. Perhaps this is what he’s thinking:
“Everybody is staring at me. I don’t blame them. I would probably stare, too, if I were in their place. I don’t look normal. I look scary. I have open, red sores all over my body. They can’t help but stare. I’m a Butterfly Boy, and there is no cure.”
Jonathan Pitre, 14, has one of the most severe cases of epidermolysis bullosa in the world. People with the condition are called Butterfly Children because their skin is as fragile as a butterfly’s wings. Even though he lives a life that most people would find unimaginable, Jonathan inspires others despite his horrific pain.
Ninety per cent of Jonathan’s skin blisters and peels, making it look as if he has third degree burns. Each day he endures almost non-stop headaches and nausea because his pain is so bad. Most nights his pain awakens him. Simple things we take for granted are agonizing for Jonathan. Holding a knife and fork to eat favorite foods, buttoning a shirt – all of these activities bring debilitating pain.
Jonathan tries to remain upbeat and inspire others. He is an ambassador of the EB charity Debra and has raised more than £65,000 to help find a cure. Be amazed at his inspiring journey.
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