--- In noonan_support@yahoogroups.com, "Stephanie" <chefsteph82@...> wrote:
>
> hello everyone! my son turned 1 on March 6, 2009. On March 3rd we were told
that he has Noonans Syndrom, specificly RAF1. I was wondering if there is
anyone else out there with the same thing that would tell me what to expect.
Anyone know of any good websites to do research on? It is very frustrating to
do a search and not find anything!! Thanks!
>Hi Stephanie, my son Connor was given a clinical diagnosis of NS and a few
weeks ago it was identified as the SOS1 gene.I am on the listserve for NS and
there are wonderful families who affected by Noonans there. Go to
noonansyndrome.org and sign up to the listserve. Here is my sons website where I
keep everyone up to date on how he is doing.
www.caringbridge.org/visit/connorrobinson.My name is Lynda and if you want to
ask me anything pklease feel free to contact me.