My name is Laurie, and I am excited to take on the role of Regional 1 director. I live in Jackson, NJ and am the married mother of three. My daughter Kailyn Elizabeth (aka Kaylee), was born on January 16, 2010. I was completely unprepared for the diagnosis of WHS as I had had genetic chromosomal testing done during my pregnancy that had come back with “normal” results. I will not lie: the road thus far has been a difficult one~ one filled with doctors and specialist appointments of all kinds—even in medical fields that I had never heard of before. Seizures, feeding tubes, and the phrase “failure to thrive” were not in my vocabulary before Kaylee was born. However, I have found great strength and support through the families in this network, and I am eager to play a more active part in this organization. If there is one thing I have come to realize, it is that we parents are a tremendous resource of help, knowledge, and support for one another. There was a time shortly after Kaylee’s diagnosis that I expected the worst: that she’d never walk, talk, or understand anything about the world around her. Well, she is still a bit young to know what her future will hold, but I know in my heart that it will be better than I could have expected when we first heard those words,”Your daughter has Wolf Hirschhorn Syndrome.”