Coming of Age

Kaylee Halko lives with progeria, a rare disease that affects 1 in 4 million babies and causes rapid aging. I spent the day photographing Kaylee at her home in rural Ohio for The New Yorker.

The word progeria comes from the Greek words pro and gēras, meaning "premature old age." With a life expectancy of around 15 years old, teenagers' bodies have effectively aged at an accelerated rate of 8-10 times the norm. Kaylee Halko just had her 22nd birthday.

On assignment for The New Yorker, for an excellent story written by Dhruv Khullar, I landed in Perrysburg, Ohio to spend the day with Kaylee. While Khullar's story sheds light on the incredible genetic advancements in progeria research and hope for a potential cure, my time with Kaylee was spent playing dress up in her bedroom, going on a joyride in her modified van, playing with her service dog Iris, and hanging out with her friends and family, doing manicures and playing video games.

Kaylee showed me her dance trophies from childhood, when she could dance more freely, with less risk of injury. She tried on her high school prom dress, which she said was difficult to find because while she loves fashion, her options are usually limited to the toddler section. Kaylee showed me her scars from heart surgery and X-rays that show her hips stabilized with metal rods. Heartbreaking realities of her daily struggles aside, the experiences from that day that stuck with me most are laughing at her ceaseless humor, glitter eyeshadow tutorials, and singing to Milli Vanilli's hit song "Girl I'm Gonna Miss You."

Getting to know Kaylee in this intimate and creative way has brought me so much joy and inspiration. She has love and support around her, and peace within herself—in a way that restores some level of faith in humanity. It comes at a time in our world when we all desperately need something inspiring and hopeful to keep us pushing on, to not just survive, but to thrive.