They call him the ‘Butterfly Boy’.
But his real given name is Jonathon. He’s just a kid, but he’s already past half of his life. According to doctors he will live to just 24 years old. He was born with with a rare genetic disease (ED) that causes his body to severely blister. As he gets older, they get bigger and deeper, and more chronic, which means that the wounds will never go away.
But even though he has this disease, Jonathon remains a champ. He says that’s why we should make the best of our lives and live each day to it’s fullest. He wants to be a liaison for those with the disease and spread awareness and inspire others. So far, he’s definitely inspired me. His drive, outlook, and spirit is truly one-of-a-kind, and I’m already infected. When I realized how positive someone so terminally ill could be, I broke down in tears.
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