Why This Site

My son Ryan was diagnosed with Hajdu-Cheney Syndrome when he was 7 years old. I tried to find information on HCS but there was hardly any information out there. It was very hard in the beginning. I felt so lost and had no guidance or support. I posted a web page about Ryan and over the past years I have found 15 other families all over the world that are affected with HCS. I have always wanted to start a support group so other families can gather information and support, so they do not feel as lost at I did when Ryan was diagnosed. I wanted to share experiences and stories of the amazing families affected with HCS. Their strength and courage are an inspiration to all. It took 7 years for the genetic doctor at Children's Hospital of the Kings Daughters to diagnose Ryan. It was very hard in the beginning, going from doctor to doctor, and finding out something new to deal with. Thank you, Diane Graham