Henry has Bardet- Biedl Syndrome, a rare genetic syndrome that causes obesity, vision loss, polydactyly (extra fingers and toes), kidney malfunctions or differences, developmental and learning delays (there are many other characteristics, but these are the primary ones). Only around 3,000 cases of BBS have been reported in the US and with many doctors not aware of the syndrome, it is often not caught or misdiagnosed until children start losing their vision. We are very grateful for Henry’s early diagnosis and all of Henry’s early intervention. Recent medical advances, especially with vision, have given us hope for Henry’s future.
He is truly our bundle of joy and adored by us and his big brothers. I wish I could go back in time and tell my pregnant self how much joy Henry would bring into our lives and that all the fear would slowly fade away. He has made us all stronger, wiser and happier and we are so grateful he is ours. Thank you for sharing our story and bringing awareness to Bardet-Biedl Syndrome!