My name is Jackie and I was blessed with my daughter, Anna, on July 9, 2002. I was told she had Wolf-Hirschhorn Syndrome when she was diagnosed at 12 days old. I was in total fog as she was my third child and I was in shock that anything could be wrong. I knew nothing about genetic syndromes and stayed close to the internet to find out what I was dealing with. She is now eight years old, and defying the odds every day. By the odds I mean that she is an incredible, strong and willing child. The first year was so confusing and hard that I vowed to make her and her diagnosis better known to the world and other parents. I wanted so badly to help others and help Anna by finding others just like her. I wanted to become involved with her support group. I became the Region 3 Director in 2009, and love having a chance to help and meet all other fellow WHS parents. The lessons I have learned from other parents and through Anna are so helpful in my life and hers. It is such a great feeling to meet other parents who have a medically fragile child and be able to talk about their life for hours and days, because they were gifted to have a child just like yours. The conferences and conventions are amazing and let me tell you, the DVD slideshows we have from the National Conventions are amazing to watch! This group makes a great difference in the lives of all those involved.