Hi there. Sorry for my bad english. I am from Germany and my daugther Rosalie was born in November 2011. The first time no one knows what she had. They just listed some syndromes they knew. Then in September 2013, after a surgery in Berlin there came a doctor and she looked at Rosie an told us what she could have. And after taking some blood and an analysis we are sure that it is the SGS. Now we are searching for people with the same syndrome. In Germany there is no one:-( Please write me and tell me about your live with SGS :-)