Eleven-year-old Lilly Diuble has known from a a young age that she could go blind.

The question of what the world will be like without her vision haunts her—but she’s decided to focus on helping others.

With the help of her family and community in Manchester, Lilly has been able to raise nearly $100,000 for the Foundation Fighting Blindness throughout the past five years. It’s an organization that funds research initiatives to help people like her with degenerative vision conditions.

Lilly's efforts have been recognized at the national level this spring: she's been named one of the top 10 youth volunteers in the U.S. by the 2014 Prudential Spirit of the Community Awards.

Due to a rare genetic condition, doctors have told Lilly that some day she will completely lose her vision. Lilly has also worn hearing aids since she was six months old.

Her working diagnosis is Usher Syndrome—which essentially means she has cone rod dystrophy and sensorineural hearing loss. In Lilly's case, the exact gene that causes the problem has not been discovered yet.

With the aid of glasses she’s more than able to play her favorite sport—soccer. Manchester Middle School, where she's in 6th grade, gives every student an iPad—which has helped Lilly to read texts and complete assignments.

But trips to the eye doctor frustrate Lilly—especially when the letters put before her during the vision test are fuzzy every time.

“It’s heart-wrenching to me,” said Lilly's mother, Angela Diuble, recalling the feeling of watching her daughter struggle to read letters at the doctor’s office. “It’s like rooting for your kid at a softball game.”

At a young age Lilly's right eye started wandering. Doctors told her parents—Angela and Scott Diuble—to that Lilly needed to wear a patch to correct her "lazy eye"—but after two years of no results, it was later discovered that Lilly had a central retinal defect.

It was at that point that doctors told Angela there was not much she could do to improve her daughter's worsening eyesight. Angela, a physician's assistant, said she had difficulty coming to terms with Lilly's prognosis.

“As a parent it’s hard to accept that that’s something you’re going to have to deal with,” Angela said. “It’s been a long road to accept that nothing can be done. I don’t accept that blindness is the end here. There’s no making this OK.”

Angela’s overwhelmingly positive attitude has carried her family forward—and has given Lilly and her younger sister, Abby, a mission.

When she was in second grade, Lilly decided that she wanted to start raising money for the Foundation Fighting Blindness. The organization is dedicated to funding research on degenerative eye conditions.

“We can’t make it better, but if we can raise money for someone else to get better …” Angela said, trailing off. “It’s not just (Lilly) you’re going to help (by donating money).”

The foundation coordinates a Vision Walk each year, where teams of participants compete to see who can raise the most money for the organization.

Through enlisting the help of her classmates and family members the first year, Lilly was able to raise about $16,000 in donations.

Surprised by the enthusiastic response from her community, Lilly and her mom decided they could do it again. Through pure donations, Lilly has been able to raise almost $100,000 in five years.

She's inspired other organizations in the community to raise money for the Foundation Fighting Blindess as well, Angela said.



Lilly's younger sister Abby has started her own team to raise money for Vision Walk. True to sisterly relationship form, Lilly and Abby now have a friendly—but cutthroat—competition to see which team can raise more.

Lilly’s fighting spirit¬—and willpower to turn her situation into a positive outcome for others—garnered her the honor of being named one of 10 national winners of the 2014 Prudential Spirit of the Community awards.

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 capitol 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.

Though she's focused on raising money for the Foundation Fighting Blindness, Lilly still wonders what it will be like to be without vision.

Every year the family makes a point of visiting a national landmark—like a recent trip to the Grand Canyon—to capitalize on the time that Lilly does have with her vision.

Angela vividly remembers a moment two years ago, when Lilly said to her: “What does it mean to really be blind? … Is that going to happen to me?”

Angela responded: “No, that’s not going to happen.”

“That’s the avenue we’ve taken—from going from this bad thing is going to happen to me. We’re not going to accept that.”

Amy Biolchini is the K-12 education reporter for The Ann Arbor News. Reach her at amybiolchini@mlive.com, (734) 623-2552 or on Twitter. Find all Washtenaw County K-12 education stories on MLive.com.