17q.21.31 Syndrome

Storm - posted on 08/03/2014 ( no moms have responded yet )

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hi,
i'm not the mother of the child with this syndrome, I am the sister.
my sister, Gemma, just turned 7 and she has the rare syndrome 17q.21.31.
I am 1 of 7 children, and Gemma is the only one of us that suffers with it. I am writing this today to try and find people that are in the same situation with the syndrome.
I need to find a support group, a group of parents that can give hope and advise to mine. we are dealing with this by our selves and feel very alone and in the dark.
thank you in advance to anyone who replies to this
- Storm

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