Hello, my name is Cindy, and I have a little girl who is 2 named Eleora she has a partial trisomy 13 with a partial deletion of 9.  I know how hard it is to find out anything to help you and how desperate you can get for information.  I wrote to geneticists all over the world and no one could help.  Pretty much no one has ever seen her anomaly before.  I did find it helpful to get involved with organizations like www.unique.com  based out of England, and also to talk to other parents in my area.  Eleora is an amazing child who is severely delayed she still doesn’t even sit up but she is doing much more than the doctors ever said she would. 

Cindy

-----Original Message-----
From: Coles Mom [mailto:shyygrl411@...]
Sent: Sunday, November 07, 2004 8:21 PM
To: trisomy_9q@yahoogroups.com
Subject: [trisomy_9q] Looking for support

Hello My Name is Megan,
My son was diagnosed with Trisomy 9Q34 and 22Q13 deletion.
I am looking for other parents gowing/ or gone threw the same or
similar. He is our first child and is only 7 mos old.