My very lovely friend from Britain recently did an interview on the BBC about Beckwith-Wiedemann Syndrome. It was very exciting for me because I NEVER hear about BWS in the media. If you want to hear what it is like for Deb to live with BWS, give this a listen. (The interview starts at about 7:30 in to the program.) Sometimes parents of children with Beckwith-Wiedemann stumble over to this blog so, I want them to hear this. 🙂
Congrats, Deb! It was wonderful to hear your voice! You were very powerful and MAN, your story reminds me of mine in early life.