In her San Francisco home, NeDina Brocks-Capla has made a shrine filled with memories of son Kareem Jones, who died of sickle cell disease in 2013. Jenny Gold/KHN hide caption
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cystic fibrosis
As a child, Rachael Goldring had multiple open-heart surgeries to treat her congenital heart disease. At 24, she still sees pediatricians because she has had difficulty finding the right care in adult medicine. Kerry Klein/KVPR hide caption
Survivors Of Childhood Diseases Struggle To Find Care As Adults
Valley Public Radio
A lucky few stay healthy despite carrying genetic defects linked to serious diseases. What protects them? Leigh Wells/Getty Images/Ikon Images hide caption
Erin Moore is collecting data to help her son's doctors make decisions about his cystic fibrosis care. Courtesy of the Moore family hide caption
Brent Hendricks visited StoryCorps in Atlanta with his mother, Barbara. StoryCorps hide caption
Kalydeco is one of the first drugs that is effective at combating the root causes of a genetic disease. Vertex Pharmaceuticals Inc. hide caption
