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Just Found Out

diggerfaux Message
8 Feb 2011, 09:53 PM

My name is Jo. I just found out at the end of January that my oldest child (Graham age 6) has Microduplication 22q11.2 Syndrome. This answers a LOT of questions I have had for the last 6 years. He was born with congenital heart disease and had to have open heart surgery at age 14 months to save his life. He is developmentally delayed and still continues to have residual delays despite intensive therapies for the last 4+ years. I came here looking for others who are affected by this problem because everything I have read says how rare it is. It is a little overwhelming to say the least.
stephalynn1 Message
9 Feb 2011, 02:01 AM

Jo, My name is Stephanie and I have two children with the duplication. They are 11 and 15 and both were diagnosed about two years ago. My son, the 11 year old, is much more severe than my daughter. If you look through old profile posts you can find more of our details. Things can be overwhelming. Even two years out I still get surprises. My main reason for writing to you is to tell you that in my experience, this Rareshare group is not very active. If you are looking for support and answers to your questions, you are much better off going to From there you can look up specifics on the duplication and become a member in both the regular group and/or the duplication group. It is a yahoo group, Feel free to ask me specifics or check out the website I listed and see what you think from there. Good Luck- Stephanie