Inside a family's fight against rare disease
Doctor after doctor, specialist after specialist, seemed to concur on only one point: They had never seen anything like what was happening to Santi.
genetic
Advocating for Rare Disease in Mississippi
A newborn screening is a routine procedure. Shannah didn't give it much thought as she brought her daughter, Emmalyn, home from the hospital. But a late-night call set her down a road towards advocacy that she couldn't have predicted.
