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Does anybody have a child with a deletion on chromosome 2???

(6 Posts)
razzdazz Thu 04-Aug-11 22:01:51

Hello, my daughter (aged 8) was diagnosed at GOSH after searching many avenues with a deletion on the long arm of chromosome 2. I have been told that it is quite unusual and have been unable to contact any other families with a similar diagnosis. It effects my daughter in many different ways, ADHD tendencies, dyspraxia, sensory issues, inability to regulate herself. She is very bright/sharp and according to GOSH has an IQ of 130!!! She can be and is lovely, unless you spent a bit of time with her you would quite often not notice that something was wrong, unless it is a really bad day and then watch out!!! She has a full time statement at school (mainstream).
Does anybody have any kind of similar experience?? I often feel so alone and have so little knowledge of the condition. Those in my family all say "she will be fine when she is older". They mean well they just dont understand.
Thanks for reading xx

1980Sport Thu 04-Aug-11 22:06:22

Hi - have you joined Unique? Once you become a member which is free, you can join their closed Facebook group - which is very active, you might meet some families there.

www.rarechromo.org

1980Sport Thu 04-Aug-11 22:07:57

They also have a massive range of information booklets the any of the various deletions.

Yr1Mum Thu 04-Aug-11 23:46:04

Hi RazzDazz just to second what 1980 has said about Unique. Once you've joined they can actually give you the names and contact details of other families with kids with deletions of chromo 2. My DD has a really rare chromo condition and through Unique we found the only other child in the UK with it - who happens to live only about 30 miles away from us!

Good luck with everything and hope you find some support. x

razzdazz Fri 05-Aug-11 09:28:04

Thank you very much for your reply's. I will take a look at Unique today. Would just be nice to talk with people that understand what it is like. x

bigbluebus Fri 05-Aug-11 09:59:46

Also Contact a Family might be useful as they also have details of support groups for specific conditions as well as running a website for putting families into 1-1 contact if there is no support group.

www.cafamily.org.uk

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