- Associated Press - Monday, June 9, 2014

ANN ARBOR, Mich. (AP) - Eleven-year-old Lilly Diuble has known from 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, according to The Ann Arbor News (http://bit.ly/1ouSeJe ). 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 someday 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 sixth 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 - 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).”

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