My daughter Noah Lynn cried 24/7 and pulled hair out of her head when she was a baby. It was terrible. The only thing that helped was driving her around day and night. She is now 5 years old and for the past 1.5 years it is getting better.

She finally sleeps without banging her head, screaming and pulling her hair. But our little lady is doing great now she is a very happy girl who likes to go to the KDC in Veenendaal (Netherlands).

I thought she could never start coloring, talking or be potty trained. But she surprised me and started suddenly making scratches on papers by scribbling on them. She can also go back and forth with the pen and pencil. She is not yet potty trained. Every time time I think she will not be able to do something and then she always does better than what I expect. I would like for this foundation to help fund treatment options for this disease that could help her.