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Hi,
We are another of the infrequent posters to the forum but
regularly read with interest how everyone is going.
Our son Oliver will be 5 soon and is making fantastic progress.
We believe Oli is the only kid to be diagnosed with Weaver here
in Australia and since the original diagnosis contact with geneticists/experts
has been pretty limited as no one really understands or has much knowledge of
the situation.
We would like to be able to get in contact with Dr Weaver, in
one way it would be nice to at least talk with someone who has more knowledge
and understanding of the condition than we have acquired.
If anyone could forward on email address or some other of making
an initial contact with Dr Weaver or his team it would be very much appreciated.
All our best to you all and your families.
Keira, John, Oliver & Niamh.
Keira James
Watervale-Mintaro Road, Watervale SA 5452
PO Box 762, Watervale SA 5452
08 8843-0178 0412 423 282
kjandjp@...
P Please
consider the environment before printing this e-mail
From: WSSA@yahoogroups.com
[mailto:WSSA@yahoogroups.com] On Behalf Of Greta
Sent: Sunday, 8 February 2009 2:47 PM
To: WSSA@yahoogroups.com
Subject: [SPAM][WSSA] Re: Hello everyone
Happy Birthday Nathan!! Best of wishes for a
wonderful day. It has
been a while since I last posted. Not much new going on with Abby.
She turned 10 in September, is 5'9" now and wheres a size 13 in men's
shoes. She has started on medication for ADHD which has helped her to
focus better during school. We had to try several before we found a
medicine that worked well for her. She is more emotional now as she
is in the pre-puberty stage. Dr. Weaver said she will stop growing
once she reaches puberty, temporarily, so I am looking forward to
that. We are going to be seeing Dr. Weaver again next month for our 2
year followup. I am interested in what he thinks and what he has
learned, if anything. Has anyone else seen Dr. Weaver lately? Have
you learned anything new?
Hugs and Kisses to all,
Greta & Abby
--- In WSSA@yahoogroups.com,
"Sandy" <znandra40@...> wrote:
>
> I have not posted for a while but I do check in every few weeks or so
> to see how everyone is doing... I'm a rather shy person but this group
> is unique and a essential form of communication between us, who live
> our lives with Weaver Syndrome and one site I'm truly at home with
> because as each one of you speak of your child your experiences your
> question and worries, I see my life with Nathan and at the end of the
> day we are the only ones who can help one another with all our own day
> to day experiences which may not be medical but are equally important
> to us mum living with a child with Weaver Syndrome
>
> With the kindest of regards
>
> Sandy & Nathan (aged 8 tomorrow 8th Feb) xxxxxx
>
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