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
Awesome!!!! I can't wait to see it. Are you on Facebook support group? facebook.com/groups/7835762...
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.
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?
oh, nice! i would love to see it also!
Kitty2013 I can't wait to watch it let me know the date due I also have a daughter age 3 with BWS 😉
Beckwith Wiedemann Syndrome
Behaviors/Emotional Needs with BWS
How reassured are you by UK doctors that frequent scans/bloods is not necessary for the 'low risk' hypomethylation at KvDMR genetic cause?
Three month old diagnosed with BWS
Hi new here from England!