Living with Bohring-Opitz Syndrome (The Story of Alex)

Alex is diagnosed with Bohring-Opitz Syndrome, a rare genetic condition caused by a mutated gene. His mother hopes that others will gain awareness and understanding of what families like theirs live each day. She believes connecting with others facing complex medical conditions makes life richer for everyone. To learn more about the ASXL gene family and to support improved care for those living with Bohring-Opitz, Shashi-Pena, and Bainbridge-Ropers Syndromes, visit: https://arrefoundation.org/