Nine-year-old Novalie has a rare and fatal disease: Childhood dementia. When her mother, Marlene, received the diagnosis, she was so devastated that she said, “I wanted to die with her.” Novalie is slowly losing her speech, memory, and movement. Doctors say she won’t live to become a teenager. Despite the heartbreak, Marlene fights daily to give her daughter joy and dignity. “There is no treatment, no hope,” she says. But still, she finds light in the dark: “She smiles. She laughs. That means everything.”
John T. Pedersen (1966) is an independent photojournalist based in Norway, with a particular focus on humanitarian issues. I have worked for a number of newspapers, trade press, magazines and agencies. Affiliated with the national newspaper Dagbladet in Oslo. https://www.worldpressphoto.org/collection/photo/2019/37713/1/John-T-Pedersen