‘Butterfly Boy’ Has Rare Disorder Causing Skin to Flake Off
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Jonathan Pitre is unlike most 14-year-olds.
Some of the wounds that cover his body will remain with him his whole life, a sad fate considering he’s only expected to live until he’s 25.
Still, Jonathan has embraced his battle against the disease. His mother says he wants to be an ambassador for the condition and help other people who are afflicted with it.
Jonathan keeps a level head about EB:
It means a lot to me. It means that I can make a difference and help people.”
Jonathan’s daily struggle is heartbreaking. He has to take medicine, be placed in bandages and take salt baths he describes as “horrendous” that average about three-and-a-half hours.
Despite the hardships, if you listen to Jonathan speak, you’ll quickly discover that his upbeat attitude is inspiring. Crediting his mother for being his everything, he says he knows he’s already past the halfway point of his life and realizes “you should live life to the fullest,” while his mother says he will do everything he can to buck the odds.
If you’d like to help Jonathan, you can donate to him.