Debra A Finley has: 21 friends 17 photos notes 2 wall posts 5 groups
Check out my photos on Facebook
Hi Noonan,
I set up a
Facebook profile where I can post my pictures, videos and events and I want to add you as a friend so you can see it. First, you need to join Facebook! Once you join, you can also create your own profile.
noonan_support@yahoogroups.com was invited to join Facebook by Debra A Finley. If you do not wish to receive this type of email from Facebook in the future, please click here to unsubscribe. Facebook's offices are located at 156 University Ave., Palo Alto, CA 94301.
-Hi Stephanie,
I have a son who has Noonan Syndrome. He was officially diagnosed only a few
months agao with the SOS1 gene mutataion. If you would like to chat please
contact me at my email add l.robinson660@btinternetcom Connor has his own
website at www.caringbridge.org/visit/connorrobinson It tells his story, has
photos and a montage. It keeps friends and family up to date on his progress. I
look forward to hearing from you.
Lynda mum to Lee and Connor
-- In noonan_support@yahoogroups.com, Robyn Ferrier <dictatorqueen@...> wrote:
>
> Hi Stephanie
>
> I'll email you from my other account - LaurenwithNS@...
>
> Lauren turned 1 on February 18th and also has a RAF1 mutation...
>
> ttys,
>
> ~Robyn
>
> --- On Fri, 3/20/09, Stephanie <chefsteph82@...> wrote:
> From: Stephanie <chefsteph82@...>
> Subject: [noonan_support] 1 year old with ns
> To: noonan_support@yahoogroups.com
> Received: Friday, March 20, 2009, 3:44 PM
>
> 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!
>
>
>
> ------------------------------------
>
> Yahoo! Groups Links
>
>
>
>
>
>
> __________________________________________________________________
> Get the name you've always wanted @ymail.com or @rocketmail.com! Go to
http://ca.promos.yahoo.com/jacko/
>
I'll email you from my other account - LaurenwithNS@...
Lauren turned 1 on February 18th and also has a RAF1 mutation...
ttys,
~Robyn
--- On Fri, 3/20/09, Stephanie <chefsteph82@...> wrote:
From: Stephanie <chefsteph82@...> Subject: [noonan_support] 1 year old with ns To: noonan_support@yahoogroups.com Received: Friday, March 20, 2009, 3:44 PM
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!
------------------------------------
Yahoo! Groups Links
<*> To visit your group on the web, go to: http://groups.yahoo.com/group/noonan_support/
<*> Your email settings: Individual Email | Traditional
<*> To change settings online go to: http://groups.yahoo.com/group/noonan_support/join (Yahoo! ID required)
<*> To change settings via email: mailto:noonan_support-digest@yahoogroups.com mailto:noonan_support-fullfeatured@yahoogroups.com
<*> To unsubscribe from this group, send an email to: noonan_support-unsubscribe@yahoogroups.com
<*> Your use of Yahoo! Groups is subject to: http://docs.yahoo.com/info/terms/
--- 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.
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 Kim,
My name is Mimi and I have noonan's. I was also born with VSD - which closed on
its own and pulmonary stenosis. I had a very successful valveplasty when I was 8
and am 28 years old.
The operation was really nothing to worry about and now I think that its even
easier. Before the operation I hardly had a heart beat - just swooshy sounds on
the eco - there was an improvement straight after the op and then it just got
better and better till I had a normal heart beat. - which was very exciting for
an eight year old.
I have led a very normal life since then - I have gone trekking in Thailand,
traveled through Asia and UK. I also lived and worked in Thailand doing tsunami
relief.
I live in Sydney at the moment but studying public health at monash - I would be
more than happy to chat to you about my health experiences with Noonan's and
heart problems.
Mimi