My son Devon has an appt today at the Shriners Hospital for a full
gait assement. I have seen a couple of sites for weaver syndrome, one
for example is Ramseyee's home page, a little girl about 7 yrs old
with Weaver syndrome in Turkey. It stated that she had hypertension
and actually required being put in a cast to be able to walk. Devon,
my son, seems to have more of the hypotension, very low muscle tone.
He walked late (about 16 months) and has always had a distinct walk
to him, loose if you will. I am soooooo nervious about today. His
toes go inward while walking and he caries his arm up. I thought that
maybe some shoe inserts could help. I was told about 2 weeks ago that
his walking differntly is in his hip ,not his toes. I am so worried.
Then last week while at the pediatricians office, he noticed Devon
gait has changed dramatically in the last 6 months or so. He said
that we could take him to Shriners, but he thinks that Devon needs to
see a nerologist as well.
Any one elses child with Weavers gone through all of this yet? I am
so nervoius. Im not sure why, probly a couple of reasons like not
wanting any thing else to be "different" about him. He is just the
cutest big boy, and as parents we all want the best for our child.
When we hear all of these complications, syndromes, and other issues
it is hard.
Help!!
April
april@...

Hi, my name is April. I am a mother of a weaver child, a boy age 3
1/2 yrs old. I have talked to Sandy  (Nathan's mom), but not much
feedback from any one else. I would like to post a poll with symptoms
that Devon, my son, has experienced. I would like for other parents,
aunts uncles etc to share with me what thier child has or is going
through. For example, It seems to be that behavior effects these
kids, some are quite severe, while others are not. Walking and
talking, and develpomentally. Eventually, I would like to write a
book for health care providers with a little more information on what
Kids and families with Weaver Syndrome deal with and the difference
with severities in this syndrome.
Has any one seen a really big person that walks all hunches over or
with a limp or some other form of physical trait? I cant help but
wonder if there are more weaver patients out there, but never
diagnosed!! It seems to me that I have read somwhere that Weaver was
diagnoses in 1974 by a Dr Weaver in Indiana, Il (USA). What if this
syndrome has actually been around a lot longer, but never diagnosed?
Or what if this is under diagnosed? Just a thought to ponder on.


April Hooper
april@...

My son Nathan has Weaver syndrome, he is just turned 4 and Ive known
since he was 18 months old...and since that time Ive tried to find
out as much as I could about the disorder and most of what Ive read
was in the form of medical text, and differcult to understand!
However, there seems to be even less writen about the type of
behaviour traits related to this disorder?

So it got me thinking...Its said that Weaver Syndrome and Soto
Syndrome are two different genetic overgrowth syndromes that over
lap one another meaning....These two disorders share almost all
charactistics and one of the few differences, being the facial
appearence of each disorder. Do I assume then, that the behaviour
traits of Sotos would be the same for Weavers? There is so much more
writen about Sotos but I have never read any real comparasons made
between the two syndromes (not that I could understand)

What Ive observed about Nathan's behaviour is that it can be rather
odd and anti social, if I had to compare his behaviour with another
I would have to choose Autism, not to say Nathan is Autistic because
I know he isnt, but he has a few traits ...examples would be

obcessive behaviour

some routine types of behaviour

Fears of noises, places and situations (crowds of people etc)

are three of Nathans behaviour traits, in fact I see Nathans
behaviour as his biggest disability and for him (I realize Weavers
would affect each person differently) it is becoming more apparent
as he is getting older, what someone would concider to be rather
cute at 2, isnt so cute, if they are still doing it at 4 or 5 or
whatever age, Im sure you get my point.

I would value other people experiences or opinions on this subject
or from a person with weaver syndrome? I cant discuss any issues
about weaver syndrome to anyone, because no one has ever heard of it
etc and so on. Im in the dark all the time,and Im just tring to find
any think, about weavers as I can! I feel Ive got to, as Nathan's
mother, I have to at least try and prepare for Nathan's future, good
or bad I would rather know then not know.

with Kind regards....sandy x

Nathan, my 4yr old son, sweats so much to the point that within
minutes of doing any sort of activity, his hair is dripping wet in
sweat! he is not that much over weight, if at all, however, Nathan
is my fifth child and none of my other kids had this problem of
sweating

Has anyone with weavers or maybe has a child or gran child with
weaver syndrome, ever experienced this? if so, please tell could you
enlighten me on this subject? or am I studying Nathan far to much?

       With kind regards.....Sandy

Each week Im going to post a

  'weekly welcome and Hi to everyone'

This will (hopfully) allow people to say Hello and say how their
week has been etc....

So a big hello to everyone, I hope you are all ok! my week has been
a bit busy, doing some extra hrs in work, Nathan has started to get
up at 3:00am again (every few months Nathan gets into a habit of
getting up really early, which usually lasts a couple of weeks,
before returning to his normal routine of getting up at 6:30-7:00)
but a part from that, every thing is how it normally is...
                   Take care Sandy x

--- In WSSA@yahoogroups.com, "hooperapril" <april@t...> wrote:
>
> Hello, my name is April. I am a mother of a 3 yr old with weaver
> syndrome. He was diagnosed about 1 1/2 trs ago now. I thought his
> diagnosis would explain more of the health issues that he has, It
> does explain most everything else about him. He is doing okay for
the
> time being. I cannot wait for another month or so. His health
seams
> to be much better in late spring till late fall. He is a large
boy,
> often mistaken for being much older, usually 5-6 yrs old. He is a
> little delayed, his age equivelent is about 20-22 months old. He
also
> has severe behavior problems (outbursts). He has a 1/2 brother,
age 9,
> (he is not very much littler than him)and a 1/2 sister age 7. They
> are both of normal size, etc.
> Devon, my son, goes to theripy very frequently, if he doesn't go
it
> seams that he regresses. He has speech, ot & pt 2x's a week. We
live
> in a very rural town called Hunters. We are 1 mile from Lake
> Roosevelt AKA the Columbia River. It is about 80 miles one way to
> Spokane WA, that is where Devon has his theripy. All of his
> specialists are also in Spokane, moslty at the childrens hospital.
He
> is going to be seen at shriners for his walking and a gait
assesment.
> Devon has very low muscle tone that effects everything!! He is
tube
> fed due to the low muscle tone and coordination that he has in his
> swallowing.He has also had problems with his digestion and
> stomach.Devon has also had a couple of cysts removes from his ear
> drum that was causing some hearing problems.
> I wanted to share a short version of what he has been through (10
> surgeries at least)and see what other kids have had problems in
and
> if they get better. Please fill free to email me at
> april@t... if any one wants to talk or share their story.
> (sorry if everything is mispelled,I'm used to spellcheck)





Hi April...

My name is Sandy, my son Nathan was diagnosed with Weaver syndrome
when he was 18 months old, he has just turned 4 in feb, so he's not
much older than Devon.

I could relate to alot of what you said about problems Devon's is
experiencing, for example, low muscle tone, Nathan is not tube fed
but he has alot of problems eating, he use to constantly choke on
food and drink due to his lack of co-ordination of swollowing, so he
tends to eat mushy foods, like soup, stews etc even now at 4,
however we have seen an improvement, as he chokes less now then he
use too, yet he eats very little maybe 1 meal a day if we are lucky,
but Nathan is in age 7/8 years, size clothes!

Nathan does have some walking problems, he once had a large gait
when he walked, which again, has improved with age, but he can not
walk very far with becoming very tied and he finds stairs a bit of a
problem! however, his therpist are watching over him.

Nathan's speech is delayed and it is very hard to understand him
when he talks, he has had speech therpy since he was 2 years old

Nathan also has seizures and has done since he was 8 months old, he
has them in clusters...what I mean is, Nathan can have a seizure
several times a day for a week or two then nothing for months, then
it starts all over again, he has simple partial seizures however in
the last 12 months Nathan has start to drop to floor for no reason,
his doctors seem to think he is having drop attacks.

Nathan does have behaviour issues, were do I start I could talk all
day on this subject...but I wont, in short he tends to have
aggressive outbursts, yet they are becoming less as his speech
improves. Nathan behaviour is more autistic like, if I have to
compare it with any thing, he has many fears of 'Normal' sounds
which can and does distress him. I would have to to say, for Nathan,
I see his behaviour as his biggest disability!

I hope some of this helps and please if you wont to talk or ask me
any thing you can e-mail me privatly at  znandra@... or via
this wonderful forum take care...


                   Sandy

Hello, my name is April. I am a mother of a 3 yr old with weaver
syndrome. He was diagnosed about 1 1/2 trs ago now. I thought his
diagnosis would explain more of the health issues that he has, It
does explain most everything else about him. He is doing okay for the
time being. I cannot wait for another month or so. His health seams
to be much better in late spring till late fall. He is a large boy,
often mistaken for being much older, usually 5-6 yrs old. He is a
little delayed, his age equivelent is about 20-22 months old. He also
has severe behavior problems (outbursts). He has a 1/2 brother, age 9,
(he is not very much littler than him)and a 1/2 sister age 7. They
are both of normal size, etc.
Devon, my son, goes to theripy very frequently, if he doesn't go it
seams that he regresses. He has speech, ot & pt 2x's a week. We live
in a very rural town called Hunters. We are 1 mile from Lake
Roosevelt AKA the Columbia River. It is about 80 miles one way to
Spokane WA, that is where Devon has his theripy. All of his
specialists are also in Spokane, moslty at the childrens hospital. He
is going to be seen at shriners for his walking and a gait assesment.
Devon has very low muscle tone that effects everything!! He is tube
fed due to the low muscle tone and coordination that he has in his
swallowing.He has also had problems with his digestion and
stomach.Devon has also had a couple of cysts removes from his ear
drum that was causing some hearing problems.
I wanted to share a short version of what he has been through (10
surgeries at least)and see what other kids have had problems in and
if they get better. Please fill free to email me at
april@... if any one wants to talk or share their story.
(sorry if everything is mispelled,I'm used to spellcheck)

Hey Elizabeth...I actually put some photos of Nathan in the album!

The first one is of me and Nathan in Manchester airport, Nathan was
3 years old at the time

The 2nd photo is Nathan and Paul on holiday in Spain, again, Nathan
was about 3

The third photo is Nathan with one of his sisters Rebecca, she is
nearly 3 years older then him!

And the last one is my precious Anthony, Carols son isn't he
beautiful

Take care.....we will talk soon

      hugs Sandy x

My yahoo email won't allow me to reply to your message.  I tried to send a new
message to
you at the other forum we go to but it won't let me attach the picture.  Please
email me
privately at poinsettia@...  so I can send the picture to you.

Elizabeth

Sandy,

I am not familiar with PSF files.  Are you on a Mac or other PC?  Do you have
graphic
converter?  If so, you can open the pic in graphic converter and save it as a
.gif file.   If not,
you can email the pic to me, I can convert it for you and email it back to you,
then you can
post it.  It will only take me a few minutes to convert.  My email addy is
woodeliz@...

xoxoxox
Elizabeth



--- In WSSA@yahoogroups.com, "Sandy" <znandra40@y...> wrote:
>
> I want to put some of Nathan's photos in a album on your site...yet
> I've tried without success!
>
> The photos I've scanned are PSF and I need to convert them to GIF
> (I think) but I dont know how to do this? Any suggestions....
>
> Hugs Sandy x

Hello Sandy and Nathan and Welcome to the Weavery Syndrome Group that has been
dedicated to you both!  I am happy that you have found your way to this group :)
Hopefully, the information and support will pick up speed soon.

xoxoxox
Elizabeth

Hi Carol and Welcome!

I am very happy that you have joined us :)

Elizabeth

I want to put some of Nathan's photos in a album on your site...yet
I've tried without success!

The photos I've scanned are PSF and I need to convert them to GIF
(I think) but I dont know how to do this? Any suggestions....

Hugs Sandy x

Hi....My name is Sandy and my son Nathan, was diagnosed with WS when
he was approx 18 months old, Nathan has recently turned 4, we live in
Liverpool, UK.

Pansy never ceases to amaze me with her spontaneous acts of kindness,
and not to try to sound too dramatic when I say this... but she is an
angle who walks amongst us all! THANK YOU pansy, I dont feel lonely
today.

As a parent with a child with Weaver syndrome, I always felt I was the
only mother in the whole world with a child with WS and today for the
first time, here you are, people living the same experiences as me,
sharing the same feelings as me. I would just like to say, how nice it
is to meet you all and I hope in time, we will share our knowlegde,
our time, our experiences and our support for one another. I long to
speak to each and every one of you!

Pansy... Thamk you!
          Sandy x x x

i would like to say hi and that my nephew nathan who has just turned 4
has weavers syndrome, i may not post often but i will read lots, my
sister will be here soon, she is nathans mummy

pansy thankyou you are an angel

love

carol mother to anthony aged 9 he is diagnosed with lennox gastaut
syndrome

I have placed a photo of my son, Aaron, in the "Photos" section of this site. 
Although he
doesn't have Weaver Syndrome, I thought it might encourage our members to create
albums and upload pictures of their children/family to share with each other.

Elizabeth

Thank you so much.  I'm sure I will be needing all the
help I can get and although she doesn't realize it, so
will my granddaugher.  Fran
--- moderator_weaversyndrome
<moderator_weaversyndrome@...> wrote:

>
>
> Hi Fran and Welcome to the group!
>
> I have a feeling your granddaughter will not be able
> to ignore her son's diagnosis for too
> much longer.  In fact, as he participate's in a
> public school setting, she will need to fall
> back on that diagnosis to get an IEP (individualized
> education plan) in place for her son so
> that he may receive the services he needs.  Those
> services will include behavioral
> modification/management that she will need to
> approve of in addition to academic
> modifications so that he can be successful.
> Otherwise, there is always the chance that he
> will be expelled as he displays these behaviors in
> the public school system.  And with that,
> there is always the concern for school drop-out.
> Here in California, we have an
> organization called Alta California Regional Center.
>  It has another name in other states
> and some stated don't even have regional centers.
> If the state your granddaughter lives in
> has a regional center, I would suggest she call and
> ask for an intake appointment using
> her son's diagnosis as the qualifier for their
> services.  They will send specialists to her
> home to help her learn how to handle the anger and
> violent outbursts as well as teach him
> how to channel those behaviors in a more positive
> way.  It would be great to have the
> daycare provider attend some of these meetings so
> she knows what to do in her care
> facility.
>
> Best of luck,
>
> Elizabeth
>
>
>
> --- In WSSA@yahoogroups.com, "fpattin85351"
> <fpattin85351@y...> wrote:
> >
> > Glad to join all of you.  I have a 3-year-old
> great grandson who was
> > diagnosed with WS at birth.  His mother had him
> evaluated the first
> > two years, but has convinced herself that he is
> just a normal little
> > boy and refuses to accept the early diagnosis.  He
> is extremely
> > bright, sharp, and motor skills are excellent.  He
> has behavioral
> > problems and an extremely quick and violent
> temper.  Maybe it is
> > normal behavior for a 3-year-old, but early
> doctors said we wouldn't
> > notice anything different about him until he began
> school.  He has
> > been in a very good daycare for two years and is
> beginning to ignore
> > his teachers, will not listen to their
> instructions, and kicks and
> > hits when not getting his way.  Any advise or
> comments from any of
> > you would be appreciated.  Also,any pictures you
> may wish to share.
> > Fran
>
>
>
>
>
> ------------------------ Yahoo! Groups Sponsor
> --------------------~-->
> Does he tell you he loves you when he's hitting you?
> Abuse. Narrated by Halle Berry.
>
http://us.click.yahoo.com/AoisKB/isnJAA/xGEGAA/wrSolB/TM
>
--------------------------------------------------------------------~->
>
>
>
> Yahoo! Groups Links
>
>
>     WSSA-unsubscribe@yahoogroups.com
>
>
>
>
>
>




__________________________________
Do you Yahoo!?
Yahoo! Mail - Easier than ever with enhanced search. Learn more.
http://info.mail.yahoo.com/mail_250

Hi Fran and Welcome to the group!

I have a feeling your granddaughter will not be able to ignore her son's
diagnosis for too
much longer.  In fact, as he participate's in a public school setting, she will
need to fall
back on that diagnosis to get an IEP (individualized education plan) in place
for her son so
that he may receive the services he needs.  Those services will include
behavioral
modification/management that she will need to approve of in addition to academic
modifications so that he can be successful.  Otherwise, there is always the
chance that he
will be expelled as he displays these behaviors in the public school system. 
And with that,
there is always the concern for school drop-out.  Here in California, we have an
organization called Alta California Regional Center.  It has another name in
other states
and some stated don't even have regional centers.  If the state your
granddaughter lives in
has a regional center, I would suggest she call and ask for an intake
appointment using
her son's diagnosis as the qualifier for their services.  They will send
specialists to her
home to help her learn how to handle the anger and violent outbursts as well as
teach him
how to channel those behaviors in a more positive way.  It would be great to
have the
daycare provider attend some of these meetings so she knows what to do in her
care
facility.

Best of luck,

Elizabeth



--- In WSSA@yahoogroups.com, "fpattin85351" <fpattin85351@y...> wrote:
>
> Glad to join all of you.  I have a 3-year-old great grandson who was
> diagnosed with WS at birth.  His mother had him evaluated the first
> two years, but has convinced herself that he is just a normal little
> boy and refuses to accept the early diagnosis.  He is extremely
> bright, sharp, and motor skills are excellent.  He has behavioral
> problems and an extremely quick and violent temper.  Maybe it is
> normal behavior for a 3-year-old, but early doctors said we wouldn't
> notice anything different about him until he began school.  He has
> been in a very good daycare for two years and is beginning to ignore
> his teachers, will not listen to their instructions, and kicks and
> hits when not getting his way.  Any advise or comments from any of
> you would be appreciated.  Also,any pictures you may wish to share.
> Fran

I would like to welcome you, your wife and your daughter to the group!  Thank
you for
joining us and for your offer to help in any way you can.  Someday, I hope to
take you up
on that offer as I would like to see a conference for Weaver's only, with Dr.
Weaver himself
speaking at the conference :)  With only 33 persons diagnosed worldwide, it
would be a
small conference, but really awesome, I think, to get everyone together for a
day or two to
share education and experiences.

Elizabeth



--- In WSSA@yahoogroups.com, "recon_rev" <recon_rev@y...> wrote:
>
> My wife and I have a six year old daughter who was diagnosed at age 2
> 1/2 by Dr. Weaver himself in Indiana.  We live in KY and I believe I
> have spoken with one of you, (a mother from Washington state).  I have
> been hoping to either find more parents or start a support groups
> myself, and I applaud the moderator's efforts in this group.  We were
> told by Dr. Weaver that our daughter was number 33 on the planet
> diagnosed with Weaver.  I would love to hear more from you and the
> journey you have been on and the discoveries you have made.  Anything
> I can help with, let me know.

Hi Patty,

I am in Northern California.  I have been a member of the Soto Syndrome Support
Association for 5 years as they welcome families of persons with all overgrowth
syndromes and my son's overgrowth syndrome is not yet named.  I didn't realize
their
conferences were for Soto's and Weaver's.  I thought they were mainly for
Soto's, Soto's-
Like, and those hoping to get a diagnosis.  I have not yet attended one of their
conferences, however, their 2006 conference will be held in Southern California
and I will
be there!  It is Dr. Trevor Cole from the UK that I hope to meet.  He and Dr. G.
Bradley
Schaefer (also lives in Indiana) are the "experts" in Soto's, however, it is my
understanding
that Dr. Cole has a knack at recognizing overgrowth syndromes in older children
who
have, until then, remained undiagnosed.

I wonder if you ought to contact the genetic counselor in Chicago?  Afterall,
they first
contacted you for information, the least they can do is to give you a follow up
on their
research.

Elizabeth

--- In WSSA@yahoogroups.com, "DONALD MAYER" <dpmayer@m...> wrote:
> There have been conferences for Soto & Weaver Syndrome, sponsored by Soto
> Syndrome group, yet I have not attened one.  Many years ago I spoke to Dr
> Weaver's staff in Indianapolis and sent him videos and medical reports, but
> have not met him. About 2 years ago, a genetic councelor from the University
> of Chicago called me and said they were doing some reseach on Weaver, and
> have not heard anymore, and the geneticist that we visited 3 years ago did
> not have any current info or updates regarding Weaver.  What part of the US
> are you in?
> Patty
>
> _________________________________________________________________
> Express yourself instantly with MSN Messenger! Download today - it's FREE!
> http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

Glad to join all of you.  I have a 3-year-old great grandson who was
diagnosed with WS at birth.  His mother had him evaluated the first
two years, but has convinced herself that he is just a normal little
boy and refuses to accept the early diagnosis.  He is extremely
bright, sharp, and motor skills are excellent.  He has behavioral
problems and an extremely quick and violent temper.  Maybe it is
normal behavior for a 3-year-old, but early doctors said we wouldn't
notice anything different about him until he began school.  He has
been in a very good daycare for two years and is beginning to ignore
his teachers, will not listen to their instructions, and kicks and
hits when not getting his way.  Any advise or comments from any of
you would be appreciated.  Also,any pictures you may wish to share.
Fran

My wife and I have a six year old daughter who was diagnosed at age 2
1/2 by Dr. Weaver himself in Indiana.  We live in KY and I believe I
have spoken with one of you, (a mother from Washington state).  I have
been hoping to either find more parents or start a support groups
myself, and I applaud the moderator's efforts in this group.  We were
told by Dr. Weaver that our daughter was number 33 on the planet
diagnosed with Weaver.  I would love to hear more from you and the
journey you have been on and the discoveries you have made.  Anything
I can help with, let me know.

There have been conferences for Soto & Weaver Syndrome, sponsored by Soto
Syndrome group, yet I have not attened one.  Many years ago I spoke to Dr
Weaver's staff in Indianapolis and sent him videos and medical reports, but
have not met him. About 2 years ago, a genetic councelor from the University
of Chicago called me and said they were doing some reseach on Weaver, and
have not heard anymore, and the geneticist that we visited 3 years ago did
not have any current info or updates regarding Weaver.  What part of the US
are you in?
Patty

_________________________________________________________________
Express yourself instantly with MSN Messenger! Download today - it's FREE!
http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

Welcome Alene!

Thank you for joining us and for your offer of support!

Elizabeth

--- In WSSA@yahoogroups.com, "alenecromar" <acromar@j...> wrote:
>
> I'm pleased to join this group.  I have had two sons diagnosed with
> Weavers.  Kendall is almost 25 and doing some wonderful things.  He's
> employed; loves to bike ride; stays busy with Church and Special
> Olympics in volleyball, basketball, softball, and swimming.
> It's been interesting to see how diagnosing and treatment has
> advanced since the first article in 1974!  We've had a lot of help
> from a lot of wonderful medical and educational professionals and we
> are very thankful.
> Don't hesitate to contact me if you feel I can be of any help!
> Alene Cromar
> Colorado Springs, CO

I'm pleased to join this group.  I have had two sons diagnosed with
Weavers.  Kendall is almost 25 and doing some wonderful things.  He's
employed; loves to bike ride; stays busy with Church and Special
Olympics in volleyball, basketball, softball, and swimming.
It's been interesting to see how diagnosing and treatment has
advanced since the first article in 1974!  We've had a lot of help
from a lot of wonderful medical and educational professionals and we
are very thankful.
Don't hesitate to contact me if you feel I can be of any help!
Alene Cromar
Colorado Springs, CO

I have just realized who you are :)  Thank you, again, for coming here and
participating as
a member.  I have a couple of questions for you.

Have you ever met Dr. David Weaver?  I have done a little investigating and
found that he
received his education in the states of Washington and Oregon.  He currently
practices
genetics in Indiana and is the Professor of Medical and Molecular Genetics, the
Director of
the Clinical Genetics Division, and is Director of the Genetic Counseling
Program.

Has there ever been a Weaver Syndrome Conference where families can attend to
gather
information from  the medical community?

I have sent Dr. Weaver an email and given him the web address of this support
group :)  I
hope he shares the information!

Elizabeth

Jeff was diagnosed w/Weaver at age 9 months after many tests with the
genetisist.  He has many of the characteristics of Weaver Syndrome, long
fingers, big feet( size 18!!)
large ears, small chin, round face, thin skin, thin finger nails, and the
femurs distal end (near the knee) has a flaring of the bone, it was thought
at birth he had an abnormality of the knees.  Jeff has completed High School
and is now in the job training program and has been at his job for one year
now and is a paid employee  and loves his work and the wonderful people he
works with.  In his free time he loves music, video games, snow skiing,
boats, and bike riding, and he has participated in Boy Scouts and Special
Olympics.

_________________________________________________________________
Don’t just search. Find. Check out the new MSN Search!
http://search.msn.click-url.com/go/onm00200636ave/direct/01/

Welcome Patty!

I can not tell you how thrilled I am that you found your way here and joined the
site!  I am
hoping Sandy will make it here soon.  Please be patient as we gather new
members.

Elizabeth

--- In WSSA@yahoogroups.com, "pattyinbell" <dpmayer@m...> wrote:
>
> I am thrilled to see this site and share  our sons experiences with
> others
> Patty

I am thrilled to see this site and share  our sons experiences with
others
Patty

This support group is dedicated to my friend, Sandy, and her son, Nathan, who
has been
diagnosed with Weaver Syndrome.

Welcome to all who find their way here to the Weaver Syndrome Support
Association!

It is my vision to have this group become a place where families and friends of
people
diagnosed with Weaver Syndrome can come to share their stories, struggles, and
triumphs.
A place where we can join together to educate and support one another.

I look forward to "meeting" each of you.

Elizabeth
Owner/Moderator
Mom to Aaron, un-named overgrowth syndrome