Lilly is living with a rare, inherited disorder called Usher syndrome that, due to gene mutations, causes deafness and gradual vision loss, according to the Cleveland Clinic. Lilly has worn hearing aids since she was just 6 months old. In developed nations, roughly four in every 100,000 children are born with the condition, and currently there's no cure.
When Lilly was a second-grader, she decided to start raising money for Vision Walk, a 5K fundraising event for the Foundation Fighting Blindness. The nonprofit is fighting to find a cure for Usher syndrome, among other diseases causing blindness.
With the support of her family, friends and Manchester, Michigan, community,Lilly raised $16,000 that first year. Now, five years later, she'll pass the $100,000 all-time mark if she can reach her $20,000 goal for this year's walk.
"I hope for a future filled with sight, something you may take for granted," Lilly wrote on her Vision Walk fundraising page. "Each day I struggle with reading, school work, even opening my locker combination, let alone running on the soccer field, BUT I am determined not to let this get me down."
Lilly's admirable achievement has drawn a spotlight from outside her small Michigan town. It was announced last month that Lilly is one of the top 10 youth volunteers in the 2014 Prudential Spirit of the Community Awards.