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rare syndromes
hows about this for genetics....i have a daughter who is one of 14 in the world..she was one of 15 but my oldest daughter passed away...throught complications of this syndrome.....talk about genetics...
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Im sorry to hear that...
What is the syndrome??
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goldberg and shprintzen..(not to be confused with shprintzen and goldberg)...
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Lisa, I posted several places on this site, hoping you would see it and that we could somehow speak here online. It seems as if you have been searching for others with kn owlesdge about this syndrome.  I, too, have a daughter who is in her early 20s with Goldberg Shprintzen Megacolon syndrome. We were just diagnosed after searching her entire life. She is a wonderful child and we adore her. She has been through so much, as have we. We have been trying to find other families with this syndrome and understand how rare it is. If you are interested in speaking, please contact me via this site, Judy
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hi...I have been searching for years and years...an all I can say right now is wow..please please contact me...of course I am interested...lisa
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