Beckwith Weidermann Syndrome

[Blodwin12]

Hello, I am new to this so forgive any errors!! I have a 14 year old daughter who has BWS, she has pretty much had all of the possible symptoms that come with the syndrome and has had many life saving and at times life changing surgeries, all faced with acceptance and bravery! What she really would like however is to have some contact with another child similar to her but although I have been in contact with the only support organisation I can find for this condition they can't seem to help me. Ideally another child of similar age with the syndrome would be perfect and who would also welcome some contact. She feels at times quite isolated as although she has met other children who like her have survived cancer, or leg lengthening treatments etc she has never met another person who has BWS. I would also like to say that if there is anyone out there who has a very young child with the syndrome and feel they might like to discuss with a parent who has been through the whole gauntlet of symptoms I feel able to at least offer some support.

[user1476140278]

I really wish I could help you...this sounds so hard at her age. I've just been googling like crazy to find reference to any teens with the same syndrome but couldn't find anything as of yet...but I'm a very, very good Googler...so I will keep looking for you.

How is she doing at the moment?

[user1476140278]

I'm sending you a PM. Look for the little red envelope or in your emails for a notification to find it.

[cestlavielife]

Have you tried the closed Facebook group ? Maybe she can find an Internet pal ?

[Vix17]

Hi Blodwin12 my DD is 1 and has BWS, she has some symptoms but I have stuck my head in the sand about it a bit to be honest. She was a big baby (10lbs 8oz) and was enduced early because of her size. She is usually 98th centile when she is measured but occasionally drops down to 91st. I would love to be in contact with you to know what we might experience in the future.