11-year-old Lilly Diuble, who has been diagnosed with Usher Syndrome, making her slowly go blind and deaf, has raised almost 100 thousand dollars for charity. The Foundation Fighting Blindness is an organization that funds scientific research initiatives to benefit people that have degenerative vision conditions.

11-year-old Lilly Diuble, who has been diagnosed with rare genetic condition that will eventually leave her blind and deaf similar to Usher Syndrome, has raised almost 100 thousand dollars for charity.

The Foundation Fighting Blindness is an organization that funds scientific research initiatives to benefit people that have degenerative vision conditions.

She has participated in their annual VisionWalk held at Kensington Metropark in Milford, Michigan for the past five years.

Her story received national news coverage when an NBC film crew came to her hometown led by journalist Peter Alexander, whose sister also has Usher Syndrome.

Lilly spoke to the people who donated to the cause saying: “I cannot thank you enough because you're not only helping me, you're helping find a cure for millions of other people that have the same or different disease.”

In honor of her participation in VisionWalk and her activism, Prudential gave Lilly their Spirit of Community Award, which was presented to her in Washington D.C. where she and her family were able to visit some historic sites.

Usher syndrome is a rare genetic disease that slowly causes hearing loss and blindness, so Lilly’s family are traveling to places like the Grand Canyon and Disney World while she can still experience them fully.