williams syndrome

[prettygal]

Hi everyone,
im new on here so not sure if im doing it right !

Does anyone had a child with williams ?
my sons 28, and is just about to have the test, not that it will really make a difference but it will be nice to know !

would love to hear from anyone in same position.
thank you

bump

Hello,
I have a son with Williams syndrome, hes 4. I also have met many other people with Williams syndrome too. My son also had a rare from on epilepsy as a baby which had made him far more delayed.

I grew up with a lady who has Williams who has a son with Williams- consdiering its so rare I seem to have many people with Williams in my life.

If I can help in any way please just ask.I have some photos of him on my profile..

Ruth

Hello Ruth,

Thanks for your reply,
Yes you seem to know lots of people with ws, ive never met anyone else with it before !

As i said my sons just in the process of having the 'fish' test ! but for a long time they said thats what he has.

He too was very delayed, and has a moderate learning difficulty, Its taken a lot of battles to get to this stage, sometimes you feel that no one wants to help you....

It's so nice to finally talk to someone else in the same position, thought i was the only one....

im gonna look at your pics now.
speak soon nancy

Hi,

Where do you live?

As I say I grew up with a lady with Williams who has a son with Williams. I also have a close family friend who has a close friend with Williams and I recently found out that an old boyfriend has a daughter with Williams. Such a small world really.

There is a Williams syndrome foundation that meet yearly and have newsletters etc which you may wish to join if the FISH tests confirm Williams syndrome.

Would be great to hear how you get on.

Hi ,
Im in Watford, Yeah i have been in touch with the williams syndrome foundation, but at that time it was unconfirmed ( well still is really) but the drs seem more sure now !!!
They sent me their DVD, and all the family think its my boy to a T'...

We have had a lot of ups and downs over the last 28yrs, but hope now he may get the help he needs.

How do you get on with yours being little ? ( he is so lovely by the way)
Mine didnt know the meaning of the word sleep when he was little, different now you cant get him out of bed... lol

Where abouts are you ?
How long have you known your little man has ws ?

Hi,

Were in Portsmouth so not a million miles away!

Ive known since he was about 8 months. seizures started st 5 months and tests were done to find out what was going on and thats when they discovered the WIlliams. He is alot more severley affected that your 'average' person with Williams. Hes 4 and not walking ot talking and unsure if he ever will but hes great-most of the time

Sleep is a problem but slowly getting better but has been dreadful.

Hi Ruth,

Yeah portsmouths not far !

Sounds a lot the same as mine, seizures also from birth, and a hole in his heart, was very slow to gain weight, and suffered from very bad colic, which we now know might have been the calcium thing ! He also was not walking, talking, or potty trained till after 5yrs ! So hang in there cos i thought it would be like that for ever but slowly they will do it, and now 28yrs on he can do a lot more than anyone ever imagined !

He actually never shuts up now
Hes such a friendly chap, sometimes tho its a prob as he will just talk to complete strangers ! so can be vulnerable like that.

Like i said he never used to sleep at all, which was worse for me than him !
haha.....

We have been through many different stages, and each one seems bad, but you get through, you have too. And he also gives so much fun and love.
After looking at your pics, i went to find some of a simular age, and i think they look very simular !

Im on fb, dont know if you are ? i can give you my email if you like ?
sorry if im going on and on.... i will shut up now, lol

Nancy x

whats your email??

Hiya Lourobert

my email is
[email protected]