Five years ago, when my son Lief was 9, he fell ill with a virus. The virus attacked his heart and flooded it with fluid. The pressure from the growing pool inside his heart tore the muscle fibers. In a matter of weeks, he was transformed from a healthy kid to a critically ill hospital patient with only one hope for survival: a heart transplant.
Needing a lifesaving transplant is truly awful for any child and family. For children with a disability, the challenges are even more immense. Lief has autism and is a non-speaking person who types to communicate. He struggles with sensory disturbance, profound motor planning difficulties and perseverance behaviors.
Because of our son’s disability, the doctors at our local children’s hospital told us that no facility would perform the transplant, and we should prepare for him to die. A second hospital also refused to consider him. As Lief’s condition swiftly deteriorated, one young physician pleaded Lief’s case to a third transplant hospital, and Lucile Packard Children’s Hospital at Stanford University opened its doors to us.