Such children in Ukraine are born 5-6 per year. No one knows the exact numbers. Every second - dies as a baby. Their skin is fragile, like the wings of butterflies. This disease is incurable. But with the right care, they can live. “The most important thing for a child is a stable, reliable mother. The child can have any condition of pain, wounds, and the mother should be close, like a rock. And then the child feels the strength that his mother loves him and in any condition he is sick, screaming, or more calm, his mother is always there. ”