"Few and Far Between" tells the story of a family with a daughter that was born with a rare genetic condition called Sjogren-Larsson Syndrome. As a result of this condition, Mia, 5, has neurological impairment, spasticity in her legs, and ichthyosis, a dry scaly skin condition. It is estimated only 100 people in the United States are effected by SLS.
Despite this condition, Mia recently started kindergarten and is making progress at school. No one know how far Mia will progress as she gets older, but she is finding her way, making friends, and learning new things like every other kindergartner.
I was initially drawn to this story for personal reasons: my dad is a geneticist and has been researching Sjogren-Larsson Syndrome for the past 25 years. Growing up, I remember making numerous trips to the lab so my dad could "feed his cells" on a Saturday or check in on a patient. When I was 23, I spent one summer working in his lab-- long enough to know I was terrible at science. But I always wondered about those for whom my dad's research meant something.
I met Mia and her family at an ichthyosis conference in Denver during the summer, and was excited to discover they lived in Fairfax, Va., just 45 minutes from my home in Washington, DC. Over the course of 10 months Matthew and Yesenia, Mia's parents, invited me into their lives: Mia's daily skin routine, birthday parties, physical therapy, Saturday evenings in. Over time, I realized I was photographing not Sjogren-Larsson Syndrome or the difficulties of living with a rare condition, but a family's love for their daughter.
Over the past two years at the Corcoran I've had incredible support and input on how to grow as a photojournalist-- support that has meant questioning established platforms and pursuing new directions in storytelling. My goal is to create work that is approachable.
For this project, I created an ebook that uses video, stills, text, and interactive features.