Severe Combined Immune Deficiency (SCID), also known as the bubble boy disease, is a rare, serious disorder where a child lacks the ability to fight off infections. Babies with SCID are placed in isolation both before and after the corrective treatment to protect them or isolate them from germs that could make them sick.
Riley’s parents share their perspective on her diagnosis, treatment, and isolation. Her story of survival is one of many. Fortunately, many children with SCID are now grown, living healthy, productive lives. SCID can affect any infant, regardless of gender, race, ethnicity or socioeconomic status. Without appropriate early treatment, including the critical period of isolation, these babies cannot survive. Therefore it is essential that newborn screening for SCID is established in all 50 states because all babies, no matter where they are born, deserve a healthy life.