Hi, Julie, I have just been doing some cyber surfing on the net and looked up Beckwith Wiedemann syndrome for some updated information. I found your web page! I just want to reassure parents out there that kids with Beckwith Wiedemann syndrome can grow up to leave normal and full lives.

I am 28, and was diagnosed with Beckwith Wiedemann at the age of 15.  I have not met any one else in New Zealand with the condition but I know there are bound to be other cases out there. I am a secondary school teacher in a rural town, have completed two degrees at University and lead a full and active life. I grew up with some of the complications of BWS, I required a cleft palate repair, and later on a tongue reduction.  I had minor surgery in later life but otherwise am relatively healthy. I have the distinctive ear creases and pits which some of my students notice, invariably they think I have had an awesome teenage experience and pierced my ears 20 times! I speak with a slight nasal tone, which is probably to do with a kiwi accent as much as having had a cleft palate. I had some speech therapy and it doesn't stop me teaching science and biology. I am very conscious of communicating myself clearly to students which probably keeps me on my toes. 

I go running, tramping, rowing, cycling and enjoy socialising with friends. I was brought up as a normal kid, was not mollycoddled and encouraged to get involved in everything; the more active the better. I am single without children. I have been told that my chances of having children with BWS are about 50%.  That is something a future partner will have to contend with. For now I am focused on seeing the world with a backpack on and discovering what else is out there.

Yes, I certainly did have a lot of lonely times, particularly as a teenager and so I know it is not easy.  My parents had it harder, they survived without support groups which would have made things a lot easier for them in the early days. Anybody looking at my graduation photos would not know that I was born with a huge tongue.  I am tall, 6foot 2", but considering someone commented that I look like Princess Di recently, I am not complaining! ( I am not quite as slim as she was!)

Take heart, the world is a big place out there with so many things for us to do and see, don't let BWS stop you from doing that.

Keep smiling
Sarah