Such children in Ukraine are born 5-6 per year. Nobody knows the exact numbers. Every second person dies as a baby. Their skin is as fragile as butterfly wings. This disease is incurable. But with proper care, they can live. The most important thing for a child is a stable, reliable mother. A child can have any state of pain, wounds, and the mother should be there, like a rock. And then the child feels the strength that his mother loves him, and in any sick state, with cries, or more calm, mother is always there.