The story of Pat
Our second child was born may 2,1973 he was normal in all ways except he had bilateral cataracts he had his first surgery at 6 months and second one a year later. At first he was diagnosed with cerebral palsy because he wasn’t walking we enrolled him in a wonderful school called Little Village and there he made great progress. As we were unaware his condition was congenital we had 3 other children who thank God presented perfectly. When I was 7 months pregnant with our youngest girl Scott was seen by a dentist who specialized in handicapped children. A wonderful man Dr. SAUL KAMEN he did a study with a piece of Scott’s hair and sent it to the Mayo clinic within a week or so we were given his true diagnosis of Cockayne syndrome. As I was working at the NY Times I accessed their library and loomed up CS there was one clip about a child in California so I called Children’s Hospital there and spoke with a director who told me the child had passed. She did know of a family in New Hampshire,so my next call was to them they had a son with cs and they knew of a family in Tennessee. So Share and Care evolved and through Scott’s pediatrician we were invited to Washington DC as part of the National Directory of Disorders. Scott lived to be 18 years and was a wonderful happy little guy who only grew to children’s size 5 and he weighed less than 3p pounds. He passed October 5,1991 and he is stillissued very much today. Share and care has had many wonderful ladies running it since I gave it over to my friend Teresa but as one can imagine e it is not an easy job especially if that person had lost their own child as with each passing of another cs child you are thrown back into full grief. There has been progress made with CS and Jackie who is currently running things is doing a great job. Share and Care is worldwide with factions in the UK Japan and Germany. I keep in touch with the group on Facebook and it is wonderful to be able to answer a question or just give a bit of support. I wish I had Facebook back in the day. Who knew that what is suppossidly so rare is so widespread.