Dillon Papier is an 11-year-old boy who has Niemann–Pick Type C, a degenerative, rare and ultimately fatal disease. In spite of this, and despite the physical and developmental setbacks that came with the disease, his parents strive to provide him with a normal childhood that revolves around school, playdates and family outings when Dillon is not in the hospital. He is currently enrolled in a clinical drug trial at the National Institutes of Health for Cyclodextrin, a promising drug. Because of the short timetable involved with the patients, parents and researchers have accelerated the trial and pushed the boundaries of medical research.
Photographed for The Wall Street Journal