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Has anyone got a child with retts syndrome? Id like 2 chat and get some advice! We have just got our daughters results bk.. Mri came bk normal but she had blood tests done and they have found a rare faulty gene thats close to retts syndrome. I dont really understand it all 2 be honest and wud like some advice, we are waiting for an app to c the geneticist and me and my partner are havin the blood tests done to c if we carry or have the faulty gene! Im so worried and scared. She is 11months old and is still practically like a newborn. She cant sit up or hold her head up for long periods, she is not smilin and is very undemanding. She hardly cries and suffers from seizures. Can any1 help me? Wud be really good 2 chat. She's my beautiful baby.
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Hi my friend has rencently had her daughter diagnosed with Rett syndrome. The link below is the place to find support and help. I have limited info on what she and her family have been through (she has chosen not to sign up to this website) so I can try to relate what I know but the website might offer more first hand experience Smile



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