About Me: Female, 41, runcorn, United Kingdom, member since Jan 2008
i have a 13 yr old daughter who has a rare syndrome called goldberg and sphrintzen and she has over the yrs had many other problems which may or may not be related.we have just found she has centronuclear myopathy,
If anyone is in contact with the woman who has a child with Goldberg Shprintzen Megacolon Syndrome and wishes to speak to a mom who has a child with the same syndrome, please contact me. My daughter was just recently diagnosed. We live in New York. In would love to connect with other families with the same syndrome. Thank you.
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