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Hello,
Ive just joined the group as two of my children have just been diagnosed with weaver.
I have very little info so far (not had time to really look at the group message etc yet) but I should be getting something from the genetics people soon (!). I have three boys, James 8yrs (with) Jack 3 (without) and Joe 2 (with). Ive been told that is extremely rare and even rarer to have more than one child with weaver. James has had loads of problems since birth, breathing, behaviour, propreception, hypertonia, hypotonic etc etc etc and Joe is showing all the same signs as James and I want to find out if this is all apart of the syndrome (all the info so far has been about birth weight, size, bone density and features).
I will try to be online each night at 8ish but things don't usually go to plan in our house so I cant plan much.
Please email me with anything you might think will help as I would love to hear from anyone who has any connection to the syndrome just to know we are not on our own.
Thanks most kindly,
Michelle Huggett
(ps. Im a bit rubbish on a computer)
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