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gmacgowan Message
21 Jul 2012, 05:14 AM

I was just looking for a site that had others dealing with SGS... Would like to connect with someone else that has any knowledge on subject. I adopted a child with SGS. And would love information.
lisbeth Message
6 Oct 2013, 10:58 AM

Hi there. I do not have a lot of information,but i have a son now 10 years old, who has got the diagnosis SGS. I habe been looking for other people with the same problems as we have, and found this site. I do not know if you get this message, but would be really nice to could share som information. Big greetings from Denmark Lisbeth
maria1979 Message
2 Apr 2014, 07:08 AM

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 :-)
gmacgowan Message
3 Apr 2014, 04:22 AM

Maria, We have a Facebook group also if easier for you I felt very alone before finding so other people recently thru Lisbeth above! My daughter is 6 years old and has 2 cranio surgeries and has multiple orthopedic issues along with other things. So far in the group I believe we have 3-4 in Denmark and one from France. I hope you get this message and can stay in contact with us.
gmacgowan Message
3 Apr 2014, 04:23 AM

Oh thru this group we have also been in contact with Dr. Shprintzen!!!
maria1979 Message
3 Apr 2014, 08:15 AM

Hey! Wow ist amazing that you answered!!! I found the group on facebook and hope the administrator allows me to join:-) Rosalie also hat two cranio surgeries. And two oh i must look for the english words:-) she has got Arachnodaktylie hypertelorism and different problemes with her bones. Too many rips but no patella ( i really must get translated thi medical words:-) ) also she ist till now not able to sit alone. She has got a "hypertonie"(?!?). And what infos you got from dr Shprintzen? My Name is Maria Ryker at facebook! Please search me! I have got so many questions!
gmacgowan Message
3 Apr 2014, 02:30 PM

I found you on FB!! I sent him (DR) an email and he responded their is a post on FB too from another mom who found him. He is very willing to communicate, I signed release forms and then I haven't heard back. I have several appts coming up, so I was going to wait until results to contact him again. My daughter has long fngers and toes and toes are now becoming hammered and locked, flat feet, deforming ankles, knees popp out of joint, she has 3 different curves of scholiosis (new xray) eye site is bad, Myopia, and Optic nerve hyperplasia, and Strabismus, she also has extrusion of the chest cavity, Craniosynostosis, was born with Gastroschisis, she is delayed in many areas. Like I said she is adopted, so she was also drug and alcohol exposed before birth, which may have different effects on her delays. Wow, that is all a mouth full. Haha. I sent you a FB request also, as that is much easier for my to log on to. But either way works for me. I just love having extra info and someone who understands the struggles we go thru. Your daughter is very cute by the way!