kwild1@... wrote:

Im sorry I cant help you my son is only 8 mos. 5 1/2 mos. adj. and we just
recently found out for sure he has Noonans but I would love to chat tho!
Kirsten mom to
Alexandria 12, Ethan 2 1/2, Owen 8 mos. PVS,PFO,ASD,NOONAN
SYNDROME,GTUBE,INFANTILE SPASMS.

----- Original Message -----
From: "lynda robinson" <lynrob1726@...>
To: <noonan_support@yahoogroups.com>
Sent: Saturday, January 22, 2005 9:38 AM
Subject: [noonan_support] hi


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> Can anyone help me? My son Connor is going to get his ears done, and
> i am trying to find out what is envolved.I would love to talk to
> anyone who is affected by Noonans.
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> Yahoo! Groups Links
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hi, Thank you for getting back to me. My name is

Lynda, my son Connor is 11yrs and we haven't really been speaking to loads of people with Noonans.Connor was diagnosed at 17mths for sure and it took me a long time to come to terms with it.He has pulmonary stenosis,asthma,eating disorder,bowel problem,sleep problem,learning difficulties,eye and ear problems and a behaviour problem, I love my son but i must addmit that some times he is very hard work but i wouldn't change him one bit.I was told that he wouldn't live through his first year and boy! he has proved all professionals wrong.

Connor is in mainstream school and he gets some learning support, in August he is going to high school with the same support i hope.A child with Noonans is very special and you have to remember to try and treat them as normal as the limitations will allow. I am in Scotland so the law is probably different. Here parents have to power themselves with the knowledge of how education works so that they can get the best for their child. Hope to hear from you soon.lynda 

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