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Chromosome 9 disorder?

(11 Posts)
tiffanysmummyx Thu 13-Mar-14 22:35:42

Hi everyone, my little girl is 1 1/2 years old she has a bilateral cleft lip and palate, she also has a chromosome 9 duplication and developmental delay.. I was just wondering if anyone else's child has a chromosome 9 duplication? When we was told we wasn't given much information about it because the hospital said it was rare. so we are basically left guessing what this is going to mean for our baby in the future in terms of her development. Thankfully we was told it wasn't anything that would affect her life expectancy and it also doesn't affect her major organs (they've done loads of tests). I would really appreciate any comments x

me55monster Thu 13-Mar-14 23:43:01

Hi tiffanysmummy

I've pm'd you smile

me55monster Thu 13-Mar-14 23:54:54

If you haven't found Unique yet they have a database of children with chromo 9 duplications. If you contact them, they'll be able to send you information about chromo 9 disorders and what they've meant for some children and they can also provide contact details for you of families registered with them.

There's also a chromo 9 facebook group - thinks it's called Chromosome 9 Support Group. Think there may even be one specifically for Chromo 9 duplications. They're private groups but you can contact the owners and ask to join. The chromo 9 one has members from all over the world, especially in USA and seems to be a really supportive community.

I know that some of the UK parents in the FB group organised a meet up last summer and have another planned for this year.

Wishing you all the very best. x

me55monster Thu 13-Mar-14 23:58:38

And I should have said - Tiffany is absolutely gorgeous grin

tiffanysmummyx Thu 13-Mar-14 23:59:45

Thankyou so much for this info it will be very helpful, and it will give me peace of mind to know a little bit more than I do x

tiffanysmummyx Fri 14-Mar-14 00:00:42

Aww thankyou smile x

autumnsmum Fri 14-Mar-14 10:08:51

Hi I just wanted to say Tiffany is absolutely beautiful

tiffanysmummyx Fri 14-Mar-14 12:03:41

Thankyou so much autumnsmum ��

tiffanysmummyx Fri 14-Mar-14 12:03:54

smile*

Outofyourmouth Fri 14-Mar-14 13:09:06

She's lovely! I just want to second the suggestion of Unique for support and information. I joined as a family member earlier this year when I had a diagnosis of a chromasome disorder for my youngest child that affects their development. I have found it a great support xx.

tiffanysmummyx Fri 14-Mar-14 13:32:05

Thankyou, I just joined them yesterday smile

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