Trisomy 22 and Misc. 22 Interest Board: Re: trisomy 22 CES

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Re: trisomy 22 CES

Posted by Jenn on 12/1/2005, 12:29 pm, in reply to "trisomy 22 CES"
152.131.9.197

--Previous Message--
: Hello, I am the mother of a six months
: old baby who has CES.We found out that
: she had a partial trisomy 22.She has
: ear malformations and severe
: coloboma.Both eyes are touched and we
: guess she can only see lights and
: therefore shadows.She will have
: further exams in hospital to see if
: her macula is touched.We have in
: France very poor informations and I
: would be very happy to get in touch
: with people having CES.Thanks Nathalie
:
To Nathalie,
Our daughter is now 3 mos and has CES. Partial trisomy addition meaning she has xtra arm not deleted. She was born with one ear a heart condition we had surgery to repair as well as some bowel problems. My only advise is to be sure that your doc check all body functions on a regular basis. Kidneys are a big problem, heart, digestion, learning (seems mostly cognitive functions). Good Luck

Message Thread:

trisomy 22 CES - Olivier 11/12/2005, 11:37 am
- Re: trisomy 22 CES - Jenn 12/1/2005, 12:29 pm
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--Previous Message-- : : --Previous Message-- : Hello, I am the mother of a six months : old baby who has CES.We found out that : she had a partial trisomy 22.She has : ear malformations and severe : coloboma.Both eyes are touched and we : guess she can only see lights and : therefore shadows.She will have : further exams in hospital to see if : her macula is touched.We have in : France very poor informations and I : would be very happy to get in touch : with people having CES.Thanks Nathalie : : To Nathalie, : Our daughter is now 3 mos and has CES. : Partial trisomy addition meaning she : has xtra arm not deleted. She was born : with one ear a heart condition we had : surgery to repair as well as some : bowel problems. My only advise is to : be sure that your doc check all body : functions on a regular basis. Kidneys : are a big problem, heart, digestion, : learning (seems mostly cognitive : functions). Good Luck : :

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