Dillon Papier was an 11-year-old boy who had 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 strived to provide him with a normal childhood that revolved around school, playdates and family outings when Dillon was not in the hospital. He was 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 accelerated the trial and pushed the boundaries of medical research. Dillon passed away in 2017.
Photographed for The Wall Street Journal