22q/Digeorge Syndrome

[YeahYeah]

This is probably a total long shot but I wondered if there were any other parents of children with 22q 11.2 deletion syndrome on the forum?? Our baby son was recently diagnosed and I would love to chat to other parents about their experiences. For anyone reading this who hasn't heard of the syndrome - it is the most prevalent after Downs Syndrome and affects up to one in 1,800 babies.

[Sol]

Why don't you try asking in mumsnet?

[YeahYeah]

Thanks Sol - good idea, will do that too but wondered if there was anyone locally as well.

[Yak]

What a worrying time for you. My godson (not local) has 1p36 deletion syndrome. There are some excellent support forums and groups for those with chromosone disorders - I think the ones our friends have found most helpful is unique:

http://www.rarechromo.co.uk/html/home.asp

Best of luck - there is support out there, and you'll not be alone.

[YeahYeah]

Thanks for your message Yak. I wish your godson all the best, I just looked up his deletion and there are some similarities. We are extremely lucky that our son is very mildly affected with none of the associated physical health problems or developmental issues that come with his syndrome (currently)! I will definitely check out the website you recommended - thanks.

[Yak]

A pleasure. Feel free to PM me if you want to be put in touch.