‘Worst disease you’ve never heard of’ causes little boy’s skin to fall off

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TUSCON, Ariz. — A Tucson boy has a rare skin condition — his skin is so fragile, it tears like tissue paper.

KGUN first introduced met Eli back in May. Late October is dedicated to bringing attention to this rare disease.

It’s a painful process for the whole family. Eli cries as his parents, Jaycee and Jonathon Henshaw, pop his blisters with needles.

Eli has Epidermolysis Bullosa, or EB. His fragile skin tears and blisters to the touch.

Doctors call it “the worst disease you’ve never heard of.” EB affects 1 in 20,000 babies born in the United States each year.

Eli’s blisters must be popped or they could spread and become infected. Now that he walks, his parents say sometimes he’ll fall and his skin will just fall off.

While some days are filled with crying and screaming, the Henshaws say the process of wrapping Eli’s wounds has gotten easier. Many days their baby boy is happy and laughing. Optimism has become the family’s motto.

The Henshaws work year round to spread awareness of EB. They want people to know that although it’s a rare condition, it happens more often than you may think.

National EB Awareness Week is Oct. 25 through 31.

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