Column: Cleveland.com reporter shares special connection with Ohio foundation helping visually impaired youth

Visual Bucket List Foundation

Reporter Kaitlin Durbin helped document 9-year-old Laylah Gonzales' dream trip to the San Diego Zoo Safari Park in June. The trip was funded by the Visual Bucket List Foundation, a nonprofit that grants special wishes to youth with visual impairments or who may become blind. Durbin has been involved with the foundation since it was formed in 2016.

I almost missed one of the greatest stories of my life.

So did the subject, actually.

In July of 2015, it was near the end of my shift when I received a call about a 5-year-old girl going to the local observatory that evening for a private viewing of the night sky. I learned she had a rare genetic disorder – Usher Syndrome Type 2A – that not only caused bilateral hearing loss but was likely to rob her of eyesight in her teens. Her parents had just learned the devastating news and crafted what they termed a “visual bucket list” of everything they want her to see and experience before her world goes dark. The moon and stars were high on the list, considering night vision was among the first things she could lose.

It was a tragic yet touching story that pulled at my heartstrings; still, I hesitated. I was working long hours as a crime reporter then for the Mansfield News Journal, a small-town paper located about an hour south of Cleveland. So, while I recognized the family’s mission would make a great feature story, I didn’t want to have to work more overtime just because the tip came to my phone. I tried pawning it off on someone else before I begrudgingly agreed to meet the family for what I thought would be a quick, voluntary interview.

When I arrived at the observatory, however, I learned the girl’s mother was uncomfortable sharing such intimate details of their lives and had cancelled the interview. I felt annoyed but somewhat relieved and started heading for my car when the family arrived. The parents, Steve and Christine Myers, thanked me for taking an interest in their daughter’s story, but said the diagnosis was still so new that they’d barely had time to process it themselves, let alone think about sharing it with the rest of the community.

I just listened and answered their questions about what I might write and where the story would appear. It was obvious Christine was most uncomfortable with any publicity, and I remember reassuring her – laughably now – that the story would probably get some attention from those who know the family, but that it was only publishing on a Wednesday in a town of less than 50,000 people. How bad could it be?

She decided that the awareness the story could bring to Usher Syndrome and the simple lesson for parents to live in the moment with their children was more important than the temporary discomfort the story may cause her. That night, I filed 1,000 words about little Lizzy Myers’ descriptions of the moon and Saturn, as she peered through one of the world’s largest amateur-run telescopes.

None of us knew then that our lives were about to change.

Readers were instantly enthralled with Lizzy’s story. Calls and emails flooded in from across the state, nation, and soon after the world. Strangers wanted to contribute to her visual bucket list. They offered the family trips, sights, experiences, money, even stays in their homes. One company gave them free airfare to any destination; the family chose Italy, where the locals gifted Lizzy pizza-making classes, an exclusive tour of the Colosseum, and the most incredible moment at the Vatican, where Pope Francis blessed her eyes.

It could have ended there.

It would have been perfectly acceptable for the family to return home, appreciate the visual memories they’d made and fade back into their quiet lives. Instead, they decided to pay forward the kindness they were shown and create The Visual Bucket List Foundation to help other children facing blindness have meaningful experiences of their own. Since then, the nonprofit has granted 12 visual wishes, mostly to children around the Richland County area, where the Myers family lives.

They’ve enabled kids to view Christmas lights from the night sky and bought several eSight glasses to help them better see their world. The foundation also built a special she-shed for a teen who is losing her sight but was unable to travel during the pandemic, and has sent others on special trips to Disney World, to dig for dinosaurs in South Dakota, or to see the U.S. Navy Blue Angels fly in Florida.

Most recently, they asked me to document 9-year-old Laylah Gonzales’ dream trip to the San Diego Zoo Safari Park to see cheetahs, her favorite animal. It was inspiring to witness her and her family’s joy and collective respite from worry. As Steve would tell me later, it’s important that they have this experience together because all will play a part in reinforcing the memory if the day comes when physical pictures no longer can. (You can read my story about Laylah’s experience here.)

The parents are expecting to use the same strategy with Lizzy, who turned 12 this year and has traded in flower picking and rock collecting for a love of art, American Girl dolls and Harry Potter. Miraculously, her hearing and vision have not deteriorated since her diagnosis. But the condition progresses unpredictably, attacking night and peripheral vision first, usually in adolescence, and then moving to central vision by adulthood.

All the family can do is wait and see what happens, as Lizzy enters these critical years. They’ve started preparing her for the worst-case scenario by teaching her to read braille and redoubling efforts to tackle the visual bucket list she started making for herself, which now includes seeing the Eiffel Tower in Paris.

I’m forever tied to the family now and will continue to follow their journey and support the selfless work that they do. Only recently did it occur to me the risk they took in letting me into their private life to share their painful and scary story when they had nothing to gain from it. In fact, it launched them into a spotlight they never sought nor felt comfortable in, yet they still chose to use their story to help others.

Ironically, my reluctant meeting with the Myers family turned out to be a defining moment, for them and for me. It is a testament to the impact one small story can have, and I am humbled that its influence continues to ripple out today, touching more lives.

All because we both showed up.

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