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.
Doctors call it "the worst disease you've never heard of." Late October is dedicated to bringing attention to this rare, excruciatingly painful skin condition. We introduced you to Eli back in May. Hear how his parents are spreading awareness of this disease NEXT on @kgun9pic.twitter.com/E7y5IavAWE