
Posted by Kristy
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on 5/28/2008, 10:35 pm
76.205.203.66
I have an 11 month old son that was diagnosed with a 22q11.2 distal deletion today. The doctor said there are only 6 documented cases in the world. I am looking for any information I can find regarding this condition. My two other children are now being tested. My oldest also has Pierre-Robin Sequence.
I know how important it was to find other families dealing with the same thing when we first found out about her PRS. I would like to talk to other families whose child has a 22q11.2 distal deletion.
Thanks,
Kristy
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