The doctor said, “You are going blind, and there is no cure.” My mom burst into tears, and I remember thinking, “This can’t be happening to me.” -Eavan O’Neill

When she was only 13 years old, Eavan O’Neill started having trouble seeing the blackboard at school. A gifted athlete, she began missing the ball while playing lacrosse and soccer. One of her coaches suggested that she have her eyes checked. Unfortunately, glasses didn’t do much to solve the problem. Throughout her teens, Eavan’s eyesight continued to deteriorate, and in this interview, she admits that wishful thinking set in until one day, she mistook the moon for a street light and it was obvious something was very wrong. Diagnosed at 20 by Rachel Huckfeldt, MD, PhD, an opthalmologist in the Inherited Retinal Disorders Service at Mass Eye And Ear, with a rare and incurable condition called Stargardt disease, Eavan is now legally blind. In this interview, she recalls returning to St. Lawrence University after her diagnosis in January 2020, only to go home two months later to her family in Yarmouth, Maine, due to the pandemic. Distraught and uncertain about her future, she accepted an invitation from her neighbor to go for a run and discovered that running flipped a switch inside of her. Says Eavan: “Running has made me feel strong, happy, and capable again.” An experienced marathoner who can only see 4 feet in front of her, Eavan runs to raise awareness and funds for a cure for Stargardt disease. Now a Development Officer at Mass General Brigham, Eavan is determined to be a voice for anyone struggling with this rare disease: “I felt so isolated when I was first diagnosed. It was like diving off of a cliff into no-man’s land. It’s hard to find hope. That’s what I want to be for people. Hope.” Although she still has “bad blind girl days,” Eavan looks on the bright side with her Instagram handle @bright.side_group. For 22 minutes of inspiration, just hit that download button. #blindness #stargardtdisease

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