Mason Byrom

Mason first came to St. Louis Children’s Hospital in June 2008, after his parents, Julie and Larry Byrom, received a call from his teacher at school. “The teacher said he didn’t look too well, and we later found out that when he fell asleep from his nap, he had almost stopped breathing completely,” says Julie.

Following an 11-day stay in intensive care, Mason spent the next two months in the hospital. Prior to his hospitalization, the boy had begun to show unusual symptoms. “He was born healthy, no problems at all. Then at 3 ½ years old, he inexplicably started to gain weight,” Julie says. She and her husband took Mason to the doctor, but it wasn’t until his respiratory arrest in school that they eventually discovered what plagued him. The diagnosis, Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood, or ROHHAD, is a rare progressive disease that affects the brain’s ability to tell the body to breathe. There are only 35-40 known cases worldwide.

Despite the severity of the illness, his mother says Mason has adapted well to managing it. “It’s not easy, he has a trach, and he needs to be hooked up to his ventilator every time he takes a nap or sleeps,” she says. “But he never complains, he considers it a part of his life” She also credits the staff at Children’s Hospital for sending her son on the road to recovery. “They were great. Child Life specialist Stacy Sedlack, in particular, went out of her way. She would always come to his room to see if he needed anything. Once he made cupcakes with her, and they walked around afterwards handing them out to the nurses,” she recalls. “Mason fell in love with the nurses, and they fell in love with him.”