Living with a rare disease: A story of two siblings

Jana and Tom Monaco have four children and two, Stephen and Caroline, were born with isovaleric acidemia (IVA), a rare disease that is potentially fatal if undetected. A crisis with Stephen at age 3 led to earlier detection of IVA for his little sister, Caroline. The Rare Disease Institute at Children's National Hospital is dedicated to supporting families, like the Monaco's, in navigating the world of rare diseases to give every child diagnosed with one the opportunity to live a long, healthy life.