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BOR syndrome

Stacy - posted on 07/19/2009 ( 3 moms have responded )

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Hi. My daughter was born w/ BOR syndrome. It's a genetic disorder that affects hearing, shape of ears, cysts in neck, pits in ears, etc. Does anyone else have a child w/ this? I'd love to talk. She is profoundly deaf in her right ear and severe to profound in her left. She does wear an aid on her left ear, but it is also the ear that is shaped different so we use sticky tape to keep it on her. I won't keep going, but if you'd like to respond, feel free.

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Marssa - posted on 11/14/2012

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I have started a parent page on Facebook for BOR Syndrome parents. Please come join me. We seem to be hard to find and I would love to meet people who could possibly help me to understand. http://www.facebook.com/groups/260624484...

Michelle - posted on 01/28/2011

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Hello! My 9 year old son has also been given the diagnosis of BOR, but with only the possiblity of the renal part. They are keeping a close eye on his kidneys, only showing alittle distention. He has had two kneck cysts removed and we just last year had the ear pits removed. His hearing is mild to moderate in one ear and moderate to severe in the other, but they tell us his hearing is fixable when he is old enough. I would love to talk with anyone about this all as I haven't met anyone with a child with BOR around where we live. Thanks!!

Lisa - posted on 01/24/2011

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Hi, my son was also born with BOR syndrome. he is severly deaf in his left ear and mild to severe in his right and wears hearing aids. because of the shape of his ear the earmolds have an extra shape on the inside of his ear to hold them in place. he has had the neck bracks and ear pits removed as a baby. we are currently preparing for a kidney transplant latter this year as his kidneys have deteriorated too much. its nice to find someone whose has a BOR child, as i have only met one other in the 11 1/2 years dealing with the syndrome.

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