Patient-Parent Advisory Committee
Barbara is a mother to three sons and two step sons. Her middle son, Alexander was born in 1987 with Classical Homocystinuria. The family was fortunate that Alex was born in NY because at the time Homocystinuria was not included on newborn screening in all states. Being a physician, but knowing very little about the illness except what she had learned in medical school, Barbara was, of course, devastated. However, Dr Selma Snyderman, a devoted metabolic disease physician at the time, helped her through the early days and years reassuring her that Alex would live a normal life and only have to be on a special diet. As time passed and as Alex grew up, she saw that Dr. Snyderman was right and Alex is now a healthy young positive-thinking man. It became evident at an early age that creating music would help him get through the difficult years of living with a chronic illness, so he has devoted his life to becoming a musician (he is aka alexorangedrink) and very recently wrote a few songs about his illness which capture his feelings and experiences with Homocystinuria. Barbara is grateful every day at the way things turned out. She feels that her other sons also grew up experiencing the issues around Alex’s illness.
Each of them were impacted differently but all of them have become better people because of it. Barbara finally has time to share her experiences with other parents in an effort to offer reassurance and insight into their struggles and achievements as they navigate through the many aspects of living with a child or children with Homocystinuria. For too many years, the only resource for families was through connecting to PKU organizations so it’s been so exciting to see the start of HCU Network America and an honor to become involved.