Rare disease leave baby with only 40% of his skin

Kahleel Clark-Smith was born three days after Christmas with a condition that has been  dubbed the "worst disease you’ve never heard of" and he has already lost 60 percent of his skin.

Kahleel has been diagnosed with epidermolysis bullosa (EB), an incurable genetic disorder that causes skin to be extremely fragile and often blisters, leaving raw sores that are susceptible to infection.

Even a cuddle or kiss can hurt his skin.

Kahleel's parents Kadyem, 22, and Kyera, 20, are raising money to have him flown to a specialist EB center in Cincinnati, Ohio, from Seattle’s Children’s Hospital because insurance won’t cover much of the trip.  Kadeym is active duty with the Navy stationed in Bremerton, Washington.

Smith said that 87 percent of babies who have “Junctional” EB don’t survive past the age of one.

Smith has started a GoFundMe page to raise the costs to cover the medical flight to get the newborn to the hospital.  The money will also help cover the special clothing and bandages he needs to cover his skin.

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