RING 9, any info would be appreciated..

[Brandy8528]

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I am a mother of 4 yr old identical twin boys, both with the EXACT same chromosome disorder. RING 9.. very rare, both have had heart defects, one had open heart, both had reconstruction for cranio. and both are severely developmentally delayed in every area. They are 4 yrs old and look about 18 mnths. I'm new to this site so I'm sorry if I posted in the wrong area. thanks in advance, Brandy

[craniomommynbaby]

Welcome!
I think you posted this in the perfect spot. I have not personally heard of this, but maybe someone out there has.

[Janet]

I'm sure you have seen this link, but there are a lot of places listed on this site that you can contact for some information. Welcome to CK!

http://children.webmd.com/chromosome-9-ring

[Mgbianco]

Hello and welcome to CK!

[AllyCat]

Wish I had some information for you, but I don't. Welcome to CK and hope you find some answers soon. Twins! I'm always impressed by mommas with twins.

[Brandy8528]

Thanks!! I have 5 altogether. an 11 yr old 8 yr old 6 yr old and the twins are 4 yrs old =) never a dull moment!! I have been looking still havent found much more than what I already know on their disorder, read on a site its linked to ALFI syndrome. ever heard of that??

[charliesmummy]

Hi there just wanted to add my welcome im glad you've found us.

I cant answer your questions as im a Metopic mummy but hopefully someone will be able to help soon x

[fitmomof2ae]

Welcome to ck! I'm sorry you are having difficulty locating the info you are seeking. I have not heard of ring 9 or ALFI. Good luck on your search. I hope someone can help soon!