Epidermolysis Bullosa, the worst disease you’ve never heard of, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States.

The main symptom is extremely fragile skin that blisters and tears from heat, minor friction or trauma and can spread to vital organs. It is always painful, often pervasive and debilitating with no known cure.

The kids born with this disease are known as “ butterfly children” as their skin is as fragile as the wings of a butterfly

“A delicate and thin butterfly like the skin of a sweet child, a rope around his life and little leaves to symbolize a rebirth…”

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