11-Year-Old Lilly Diuble, Facing Blindness, Raises Money To Help Others See

Lilly Diuble is an 11-year-old girl with a different way of looking at things. Facing blindness due to a rare genetic disorder, many would err towards self-preservation.

Not Lilly.

She’s raising money to help others see. With the help of her family and community, she has already raised $100,000 for the Foundation Fighting Blindness, and it’s something she’s been doing for the past five years.

Her organization of preference funds research initiatives that help people like Lilly, who have degenerative vision conditions.

Her efforts have received national attention with her being named as one of the top 10 youth volunteers in the US by the 2014 Prudential Spirit of the Community Awards.

Diuble’s fostered this spirit of giving in spite of being dealt some pretty tough cards from the time she was just six months old. That’s when she received her first hearing aid.

Doctors followed that up by telling her that she would one day “completely” lose her vision.

The current diagnosis is known as Usher Syndrome, meaning she has cone rod dystrophy and sensorineural hearing loss. In her case, doctors have not been able to uncover the exact gene causing the problem.

Glasses enable the sixth-grader to play soccer at Manchester Middle School. A school-issued iPad allows her to do assigned readings and complete her assignments.

“I can hear well with my hearing aids and I can see okay with my glasses, but that could change over time,” Lilly said.

When she found out about the foundation’s annual VisionWalk fundraiser, she saw an opportunity to impact not only her own prospects, but those of everyone with vision loss.

“I am not a doctor or a scientist, so I can’t personally cure people,” she said. “But I can help by spreading the word and raising money for the cause.”

Angela, Lilly’s mother, called the hopeless diagnosis “hard to accept,” and so she started teaching her daughter from a young age that it wasn’t something she had to.

“It’s been a long road to accept that nothing can be done,” Angela told MLive.com. “I don’t accept that blindness is the end here. There’s no making this okay.”

That spirit has rubbed off on Lilly, who decided she wanted to start raising money for the foundation in the second grade.

She rallied classmates and family members to give more than $16,000 during her first year of efforts. The response has improved with each passing year.

Lilly found out she’d been named as one of the top 10 youth volunteers earlier in 2014. From the MLive report:

The awards celebration in Washington, D.C. this spring gave each of the 10 winners the red-carpet treatment. Lilly and her family spent several days touring the capital before the official ceremony.

Though being among the other student winners was slightly overwhelming due to the adversity of the challenges they had faced, Lilly said the whole experience was simply “awesome.”

In May Manchester Middle School was presented with a crystal trophy to commemorate Lilly’s accomplishment.

Kids like Lilly Diuble and this guy who carried his brother with cerebral palsy 40 miles to raise awareness, give us faith in future generations.

Want to help Lilly out? Don’t just wish her luck; spread her story by sharing on Facebook and/or your other social networks.