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I almost missed your post because there are so few posts on this site! My son, alex, is 19 months old and was "diagnosed" at about 15 months. he seems to have a very mild case we have been told. He was pretty significantly developmentally delayed, but we got him into therapies early, and he has caught up with all the fine and gross motor skills. he is still very behind in speech. he does not have any words yet. He does do pretty well with sign language, though. we live in Portland, OR, and from what I understand, there are not many people out there diagnosed with Weaver syndrome which makes it kind of tough because I am eager to know what is in store for alex. I have emailed dr weaver a few times and he has been pretty helpful. His email is dweaver@... Good luck with finding answers that you need!
Mary
xselinaregan <xselinaregan@...> wrote:
xselinaregan <xselinaregan@...> wrote:
Hi everyone
my name is selina and i have a 4 year old son called charlie who has
weavers syndrome.We live in Ireland and we believe charlie is one of
two children in ireland who has weavers .
I am so happy to have found this site and yet a little nervous!!
I am so looking forward to sharing with you all
Charlie is a fantastic little boy who is doing really well .he is in
mainsteam school with a special assistant,everyday he never ceases to
amaze us .
do any other children have scholosis???
any info on how to contact Dr .weaver.
i would relly love to hear from any other parents of similiar aged
little boys.
Really looking forward to hearing from you
hope all the children are well
best wishes selina
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