Let There Be No Light
Photograph by Sarah Leen
Fourteen-year-old Jeramie Church suffers from a genetic defect known as xeroderma pigmentosum (XP), an inability to withstand ultraviolet (UV) radiation. Because UV light can cause severe blisters, skin cancer, and DNA damage, Jeramie goes to great lengths to avoid any exposure. Tinted windows and 25-watt lightbulbs at home reduce his risk. When he does go outside in daylight, he wears a $2,000 NASA-made full-body suit and ski goggles. For people with XP, DNA damage accumulates and often leads to skin and eye cancers. The condition is rare—fewer than 2,000 cases have been confirmed worldwide.