Epidermolysis bullosa, most commonly referred to as EB, is a rare condition that causes trauma and blisters whenever one’s skin is touched. The illness significantly complicates one’s life, making the most normal of tasks seem daunting and impossible.
Jonathan Pitre is a 14-year-old boy who suffers from this condition, but instead of letting it stand in the way of his life, he’s using it as a way to reach out to and teach others. Dubbed “Butterfly Boy,” 95 percent of Jonathan’s body is covered in blisters because of the rare genetic disease that he was born with. He says that everything in life is difficult, from eating, to walking, to getting dressed. All things that most people take for granted are tasks that cause Jonathan great turmoil.
Tragically, he is only expected to live until the age of 25. He says that knowing he’s already reached half of his life expectancy has given him new perspective and that he likes to live life to the fullest and encourage others to do so as well.
Rather than stay confined to his bed, he’s determined to make the most of the time he has left and has dedicated his life to helping others. At such a young age, he’s already an ambassador for EB and has had the opportunity to speak on panels and inspire other young people living with the disease.
Jonathan has chosen to live the years he does have left to their fullest and hopes that his life with inspire those around him. It is a truly beautiful message — that a young person with the world seemingly against him can still choose to do something good with his life. His message is one that we should all take to heart: to live life like there is no tomorrow and simply enjoy the present.
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