Any 22q parents here?

[isitmeoris]

Hi everyone, I have 4 children, my youngest has 22q deletion syndrome, she is 4 and we got her diagnosis 9 months ago, just wondering if there are any other 22q parents out there that can offer any insight to things yet to come (academically/pysically/emotionally) or if there are parents needing advice/support, there seems to be a lot of proffessional and medical info on line but not a great deal of real life situation support

Hi there,I wonder if you might connect with some people if you also post under children's health topic? I think this one is quite quiet. Best of luck.

Thank you, am a new member so not sure how this all works yet! Thanks for your reply

I follow an inspirational lady on instagram with a dd who has 22q issues. I can pm you the link if you want.

There's a special needs section too depending on whether your DD has any additional issues. My son has mosaic trisony 12 and 18 so I know how hard it can be. Are you registered with the charity unique?

I'm not sure about the UK, but there's a really good Irish support group where you might get some info.

Best of luck with your child's journey.

That would be great thank you!

Thanks for your reply, I know all the 22q medical info backwards but there doesn't seem to be many 'real life' experiences online is this something Unique could help me with, I know every child is different but even a small insight into what's to come as a parent and for a child would be very welcome

It seems to be quite variable in its manifestation. Some have severe problems, some have some learning difficulties but can do OK in school, about a third apparently have no learning difficulties at all.
Posting on SN/general health may get more responses.

If you register with unique, they can send you out details of other families with a child with the condition of something similar who are happy to be contacted. They're also a generally useful resource

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