[ Post a Response | 22q Deletion Interest Board ]
Posted by Jody
on 11/29/2008, 3:01 pm, in reply to "22q11.2 distal deletion"
97.17.43.56
My 3year old daughter has distal 22q11.21 deletion syndrome. She was born 11 weeks early and stayed in the hospital 17 weeks. We have her primary care doctor and four different types of specialists that follow her case. We received her diagnosis two weeks ago and we were also told of six known cases. We have five children total and three of them have delays. The youngest daughter had the genetic test done and it was negative for the deletion. We are still trying to find the reasons for her delays. Our son will likely be the next child we have tested. I can tell you what we see in our daughter but some of it may be related more to her early delivery. Jody
--Previous Message--
: 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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