---




Hi Jenny

My son Nathan was diagnosed with Weavers at 18months old, started to
walk around the same age, Nathan was 'out' of toddlers size nappies at
around 9months although in the UK we were supplied with 'Attains' (Im
sure thats not the right spelling) which were free from the National
Health, they are nappies for kids who suffer Incontinence, and they
where delivered to us on a monthly basis, so we were rather
lucky...one less worry!

Nathan does not suffer from any major illness like some kids with
disorder and we were also told that he was high function, nathan does
however have brown birth like marks on his body and they are keeping
there eye on him we were told not to worry until he had 5 or more he
has 4 now, not sure of the name but its hard not to feel a little
concerned! and yes you do feel like your the only mother in the world
dealing with a child with Weavers! I have always said that Weaver
Syndrome is a lonely syndrome! People have asked me 'what is it like
to have a child with such a rare disorder my reply is ...all that it
means to us is that you have no where to turn and no way to prepare
for the future!

I see Nathans biggest disability a part from his seizures, his
autistic like behavior, he is approx 2 - 3 yrs delayed in most areas
but not in all ...and you know I don't think I would change him...that
may sound awful but he has brought so much to our life's and he see
the world around him in such a odd but fastening way he has tort us so
many things!

My pregnancy was rather uneventful until the end, Nathan was born 8
days early as a result and the worst labour and birth out of my 5 children


Its almost midnight here and Im going to have to force myself to
bed...I could stay up all night and talk on this subject and I think
its because I have never really had the opportunity to talk to other
mums living such similar lives and its wonderful to meet you all and
Jenny I have always referred to Nathan as my little giant! its silly
to be able to relate to some thing that I suppose mean nothing but
really it means every thing.......Take care to you all

With Kind Regards ......Sandy xx






In WSSA@yahoogroups.com, "Jenny" <myjenny_80@...> wrote:
>
> --- In WSSA@yahoogroups.com, "kakane13" <foodykane@> wrote:
> >
> > Hello! I have posted before but it's been a long time. My
> daughter
> > Maura was diagnosed with Weaver's when she was 15 months old. She
> is
> > now 2 1/2 and is 50 pounds. She has had heart surgery and is in
> > remission from neuroblastoma. I know that there are other cases of
> > neuroblastoma in Weavers and was curious if any of the members have
> > children that have had it. Maura also has issues with the way her
> > brain developed and doesn't properly move her left side and
> currently
> > doesn't walk. We have made a lot of progress and see her possibly
> > walking someday. Since she doesn't walk she obviously isn't close
> to
> > potty training. Pampers recently started making a size 7 diaper
> > (cheapest place to find it is on www.amazon.com) but I don't know
> how
> > much longer she'll be in it. We were told at the doctors that the
> > smallest depends was her option, I was curious if anyone else knew
> of
> > any other options of diapers. I also saw in one of the email
> strings
> > that there are other support groups of other overgrowth syndromes,
> > and was curious where these were.
> >
> > I agree with one of the posts, I wish more people posted. I feel
> > like I'm on an island with Maura's issues and would love to chat
> more
> > with people who understood.
> >
> > Hope to start a chat!
> > Hugs and prayers,
> > Kate and Maura (North Carolina)
> >
> Hi Kate, my name is Jenny and my son Earl was diagnosed at about
> 1yr. Luckily he does not have many of the health issues as oother
> kids with Weavers but every once in a while the specialists still
> like to poke and prod. I feel bad about all the things the kids go
> through. I work in a nursing home and for the longest time I couldn't
> let Earl see my in my scrubs or he would have a terrible fit and
> wouldn't even come to me. He's 3 now and we don't see the doctors so
> much anymore. He started walking at about 2 but I dont even know how
> to go about potty training because we're still trying to find a way
> to communicate with him. I just started using a picture book so he
> can show us what he needs, but he's not catching on yet. i find with
> Earl that he has to do things in his own time. It's frustrating but
> I'm learning to just let him be who he is. His father and I are both
> stubborn so it would only make sense that our kids are pretty strong
> willed. If you don't mind me asking, what was your pregnancy like? I
> had such a terrible pregnancy and was flagged high risk when iwas
> about 6 months. I'm curious if other moms and babies had many
> problems. It is nice to bounce things off of other parents who know
> what we're talking about rather than doctors who very often have no
> clue what it's like raising these cute "little giants". I hope to
> hear from you soon, and best wishes to you and Maura.
>
>
> Yours,
> jenny
>