Lilly Diuble has a different way of looking at the world than most kids her age. She’s using her time very wisely because of a bucket list of things she wants to do and see before she’s robbed of her sight.
Lilly’s doctors believe she has Usher syndrome, a rare degenerative disorder that causes both hearing and vision loss. The question of what the world will be like without her eyesight is worrisome, but Lilly’s optimism has never faltered. Facing blindness, she’s leading the charge to help others who share her condition.
She began raising money for an annual event called VisionWalk organized by the Foundation Fighting Blindness back when she was in second grade. Five years later, she’s raised a total of nearly $100,000.
For Lilly’s parents, Angela and Scott, the diagnosis was both confusing and heartbreaking. They set out to help their daughter fulfill a bucket list. Already checked off – the Grand Canyon, Washington D.C. and Disney World.
“I want to see the Golden Gate Bridge, the Eiffel Tower and the Statue of Liberty,” Lilly told “Nightly News” in June. When her story appeared on the broadcast, viewers from all across the country jumped at the opportunity to help Lilly see all the things she dreamed of.
One “Nightly News” viewer, who wishes to remain anonymous, arranged for Lilly to see the Golden Gate Bridge. We caught up with Lilly and her family in San Francisco.
“We’re visiting some of the cool sites like Alcatraz and the Golden Gate Bridge and the rest of San Francisco. We’re touring Fisherman’s Wharf,” Lilly said. “It’s just really cool that this is happening.”
Her parents and younger sister Abby accompanied Lilly on the trip.
“As a parent you want the best for your child,” Angela said. “But it’s incredibly overwhelming when people you don’t even know want to make great things happen for your kid.”
Lilly knows she faces more challenges ahead, but she’s undeterred by her disability.
“I’m very determined to not let this get in the way of me being a normal person,” she said. “I felt like the happiest person in the world because there are people that want to help me with what I’m going through.”
And in the face of a cruel disorder, Lilly is paying it forward, envisioning not just a bright future for herself, but for others.
“She stands up for what she believes in,” Lilly’s sister Abby said. “She stands up for everybody.”
First published August 12 2014, 11:39 AM