I too have a child that was diagnosed with a rare skin disease. His father and I researched and read until our eyes couldn’t take anymore and our heads spun with even more questions than we started with. Know that you are not alone. After living with the disease for over ten years now our son has developed such an inner strength. I’m in awe and so proud of him. I hope you’re able to find a cure, but if not I hope she too will developed a strength that surpasses all explanation.