Videos of the "butterfly children” are difficult to watch. The name comes from the delicate skin of people who have epidermolysis bullosa, which is reminiscent of the fragility of a butterfly’s wings. The slightest touch evokes painful blisters and peeling skin.
“I was born with the worst disease you never heard of,” says Rafi Lily in one video. “I know mom doesn’t want to hurt me, but taking off bandages is hard. It feels like fire is beating me up and sharp dogs teeth are digging into me. But we’ll have to do it all over tomorrow and the next day and every day for the rest of my life.” Read More
“I was born with the worst disease you never heard of,” says Rafi Lily in one video. “I know mom doesn’t want to hurt me, but taking off bandages is hard. It feels like fire is beating me up and sharp dogs teeth are digging into me. But we’ll have to do it all over tomorrow and the next day and every day for the rest of my life.” Read More