Tuesday, January 31, 2012

Self-Management - Laurence Moon Bardet Biedl Syndrome

I wanted to share this video so that others can better understand Bardet-Biedl Syndrome.As I listened to this I just started to fall apart because all of the feelings and experiences are so familiar to me. Our world feels lonely, scary, and is very unknown. Some days it seeams as though BBS has taken away our dreams for our children's futures but, last night someone said, "They aren't missing out on anything!" Their world is beautiful and perfect! They are happy. We can't fix or change them. There is nothing to fix. We have to join them in their world. And, if we are patient and lucky enough we might just catch a glimpse of the vision of how God sees our special children.


  1. It's interesting to hear of someone else's experience. Thanks for sharing.

  2. My son who is 23 years old, was diagnosed with BBS last year. As he was growing up, we dealt with his speech and kidney issues;however, along the way we were totally blessed with an amazing son. Presently, he is a senior at college majoring in Biology, living with three roommates, has a tons of friends and is loving life. He officially was diagnosed with retinitis pigmentosa when he was 17, but he has lost minimal vision so far. My advise is to of course deal with the medical isssues, but to focus your son's strengths. There has been heart breaks along the road,but that's what happens in life. My son has overcome obstacles, and as a result, his character is incrediby strong. He's a true role model and inspiration to me. I'm a very proud mom.