Lily's Gift | UPMC Children's Hospital of Pittsburgh

When she was born, Lillian Grace Smith was the perfect baby. But a few months after birth, her parents, Benjamin and Kathleen noticed regression in Lily's mobility and muscle control. After metabolic, neurologic, and genetic testing, Lily was diagnosed with early infantile Krabbe disease, a rare, degenerative genetic disorder. The Smiths, stunned by the news, were led to Maria Escolar, MD, MS, director of the Program for the Study of Neurodevelopment in Rare Disorders (NDRD) at UPMC Children's Hospital of Pittsburgh. Learn more about the NDRD: https://www.chp.edu/our-services/ndrd