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Holt-oram Syndrome Heart/Hand

Donna

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I have a 14 year old son with HOS who got a broken collar bone last year in which he is now having more trouble with it paining and numbness. I just found out that the collarbone is affected with the syndrome. He had ASD,VSD,PDA,surgery at 13 days old and has hearing loss because of pneumonia 3 times. We are in Ar. and I would like to find other families to consult with concerning the syndrome. My son has been a very ill child, unlike Sharon's daughter, I'm assuming because she talks of normal child, my son knows how ill he has been. The several surgeries he has endured along with the pain. My son is very small compared to others his age, poor feeder could not breathe and eat. Please email me at kenny_f88@yahoo.com if you would like any information on HOS, or if you have any info. concerning HOS and school/legal issues/good attorneys for injury or disability issues.

 


   
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