RING 9, any info would be appreciated..
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
Welcome!
I think you posted this in the perfect spot. I have not personally heard of this, but maybe someone out there has.
Cindy
*Skull bone removal surgery in summer of '77 for right unicoronal*
Mommy to Simon
*CVR w/ FOA surgery on June 29, 2005 for bicoronal*
*CVR with bone graft and bone paste surgery on July 15, 2009 for bicoronal and defects*
*Bone grafts and titanium plates on June 27, 2012 for defects*
Soul Mate to Chris
See our cranio journey at
www.thescofieldfamily.com/craniosynostosis.html AND http://craniomommynbaby.blogspot.com
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
Mom to Noah (no cranio)
Fiona (Metopic):
Surgery #1 CVR/FOA 9-26-07 (age 10 months) Sick kids in Toronto with Dr. Phillips (PS) Dr Kulkarni (NS)
Surgery #2 Cyst removed over left eye 9/08 Dr. Phillips (PS)
Surgery #3 Cranioplasty 10-18-11 (almost 5 years old) for soft spots filled in with titanium plates/peek implant from bone resorption and scar revision. Dr. Phillips
Hello and welcome to CK!
Mary - Mommy
Victoria born on April 18, 2008 - No Cranio
Angelo born on March 4, 2010 - Sagittal Synostosis
Surgery on July 30, 2010 at the hospital for sick children in Toronto, Ontario Canada
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.
Allison
Mommy to:
Matthew (7) No cranio
Rohan (5) Left coronal Surgery 2008
http://www.caringbridge.org/visit/rohansorg
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??
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
Jacqui - mummy to Charlie, Metopic cranio & Harry (no cranio)
Surgery carried out on 6th Sep 2007
CVR/FOA at John Radcliffe Hospital Oxford
Surgeon - David Johnson
Charlie's Metopic Journey - www.craniokids.org/support/showthread.php?t=16222
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!
Sagittal surgery - 02/26/2009
Second surgery suggested to correct a bump on the head and fill in soft spots.
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