10 Answers

My son was diagnosed at 19 months and it explains a lot, but I’m devastated as to what it will mean for him in the future. Is there anyone that has a child/ren with 22 q 11?  What were your experiences? Thank you for helping!

Posted anonymously, 2nd April 2014

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  • It is believed to be the second most common genetic disorder behind Down’s Syndrome, yet most have never heard of it! Because each person diagnosed with 22q presents a unique set of the possible 180+ symptoms, it is difficult for even the best doctors to recogonize.
    I’m sure there are support groups out there and I would certainly connect with others going through the same.

  • Good luck with your dilemma I have never heard of this

  • Ive only just heard of this myself…

  • http://www.22q.org/ – support group and info

  • Hopefully Marlo (below) can connect with you and help you out

  • On
    investigation (my son)


    I also have the same duplication.

  • I must admit that i had not heard of this condition but I went to google…so you have helped educate me…thank you.

    I cant really offer any help with how to deal with the condition …I wish I had some magic words.
    I do strongly believe though that when special children such as your son arrive in this world that they are given to special parents. Even though you may not think you are anything special you need to take a step back and quietly look at all you will learn from this little boy….you give him all the love you can and he will give you all his love back and while you are on this wonderful journey of life together just marvel at all the things you will experience and learn thanks to this wonderful child being in your life.
    Take care and big hugs full of positive energy for you.

  • I have never heard of this but I would be doing internet searches to find out a lot and some times this will link you with like parents to your self. I hope all goes well for the future

  • I have never heard of this at all. Im guessing there would be some sort of support group around that might be able to share their experiences and help you with your questions.

  • I had never heard of this until now, but some people have no symptoms and others have a few. I hope he doesn’t have much of handicap in the learning field and such

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