BBC: My daughter is 7 years old had has BWS. We... - BWS Support

BWS Support

708 members196 posts

BBC

Kitty2013 profile image
6 Replies

My daughter is 7 years old had has BWS.

We have been fming with the BBC for Horizon and the programme is due to air at the beginning of September.

It's a documentary all about BWS and how Nell our daughter has been affected. Will confirm date as soon as I know but should be good

Written by
Kitty2013 profile image
Kitty2013
To view profiles and participate in discussions please or .
6 Replies
3kidsinfi profile image
3kidsinfi

Awesome!!!! I can't wait to see it. Are you on Facebook support group? facebook.com/groups/7835762...

JareBear profile image
JareBear

I would love to know more about this documentary. My 17 year old has BWS but was not diagnosed until he was 13 I always knew something was not ok but nobody could help me I still am not sure if he is getting the help he needs. Because we did not know anything we just kept him in the mainstream of life he had speech therapy but no other special help. He struggles in school and I wonder if I should be doing something different. I think I don't really grasp that he is different. I only see my giant sweet son but I feel I should be getting more education and seeing how more families have dealt with this.

nancyc profile image
nancyc in reply to JareBear

Hi! My son Myles is through what I call "the worst of it". Outside of his 3 month sonograms for Wilms tumors and his heart condition we treat him like a "normal" child. I just don't know if he is "normal". He attends a preschool through the state that offers speech therapy and behavioral help. He had had this state help since he was 6 months old. He is not developing at the rate of my other children and I am looking for support from parents with older BWS children. Is he defiant but sweet? This could be personality, but I worry that his low blood sugars in early days have lead to autism. Any advise?

Kitty2013 profile image
Kitty2013

Hi

No we not on any other support network.

I will let you know when it is on

Nina-Dennis profile image
Nina-Dennis

oh, nice! i would love to see it also!

mychild profile image
mychild

Kitty2013 I can't wait to watch it let me know the date due I also have a daughter age 3 with BWS 😉

You may also like...

Will tongues of babies with BWS get bigger as they grow?

Hi I'm Josh, my daughter has BWS. She was born with omphalocele, has large tongue, ear crease, and...

Blood tests and ultrasounds

Our daughter was diagnosed with BWS when she was 8 weeks old. We were told at our initial consultant

Behaviors/Emotional Needs with BWS

with my son. My son is 5 years old and has BWS. He was diagnosed at birth. He has had leg flare ups...

Beckwith Wiedemann Syndrome

would have been able to!!! If anyone who sees this has BWS or is the parent of a child with BWS, I...

Hi new here from England!

months old and we are currently waiting genetic blood tests back to see if he has BWS. He has...