BBC

Epidermalysis bulosa, in case anyone is unfamiliar with it.

I didn't need to read the article, I had a family member with it. It's fucking brutal.

Edit: read it anyway; it's the exact version of the disorder, and my brother died of it at 18 months. That this kid is in that good of shape is a minor miracle, even with his parents doing what needs doing. It only takes the wrong injury at the wrong time, and things cascade.