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Here some suggested organisations that offer expert advice on SN.

Chromosome 9 disorder?

(4 Posts)
tiffanysmummyx Thu 13-Mar-14 22:34:04

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

Levi174517 Sat 15-Mar-14 14:16:46

Sorry I haven't any experience of this but I did find a group online for chromosome disorders.

They might be able to offer help and support.

Hope This Works

Your daughter has the most beautiful eyes smile

tiffanysmummyx Sun 16-Mar-14 15:07:55

Aww thankyou smile

Sund0g Mon 17-Mar-14 11:35:30

Hi tiffanysmummyx, our son has a chromosome 14 deletion which at this time is completely unique so we are in a similar situation to you and understand how you must be feeling. He has just turned 3 and was diagnosed last June.

There is a wonderful organisation called Unique ... www.rarechromo.co.uk/html/home.asp

If you contact them, not only do they have a wealth of information on rare chromosome disorders (see their yellow book), but they will also provide you with contact details of other people around the world with overlapping duplications on chromosome 9, as well as people in your area with rare chromosome disorders. They also have an online forum which is useful to talk to others on. I hope you find this helpful, we really have. Just remember there may not be any or many others with the same condition as Tiffany but there are lots of other families out there in the same boat as you and it really does help to know that. If I can help any more please do get in touch. xxx

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