Parents create ‘visual bucket list’ for daughter before she goes blind

Kaitlin Durbin / AP

(Today Show)- Steve Myers wants his 5-year-old daughter to catch as many fireflies as she can. He wants to take her on hikes to nearby mountaintops, visit the zoo and look through observatory telescopes as often as possible.

“We’re trying to get her around to all those places to burn those memories into her mind for later,” the Ohio dad said.

His daughter, Lizzy, has Usher Syndrome Type 2, a genetic disorder that causes partial hearing loss and progressive blindness. For now, the young girl wears a hearing aid and can see fine, so Myers and his wife have created a “visual bucket list” of things they want her to experience in case she loses her sight completely. They expect Lizzy’s sight to worsen sometime after she reaches early adolescence. She first will lose her ability to see at night, and then start to experience tunnel vision.

Lizzy was diagnosed with Usher Syndrome a little more than a year ago after her parents sought help for her speech problems. Initial testing revealed she suffered from bilateral hearing loss. The Usher Syndrome was discovered through additional genetic tests.

“If we had not done that, then this would have been hitting us in the face. She would have been losing her night vision, and who knows how bad before we even knew it was happening,” said Myers, who hopes his family’s story will encourage other parents to get their children tested.

For now, Lizzy sees clearly.

“She sees perfectly fine. There’s no indication that she’s losing any of her night vision or anything like that,” he said, although he did get nervous last weekend when the family went to see a local production of “Mary Poppins.”

“Every once in a while she would look and squint, and it makes you nervous,” he said. “But far her sight should be fine. We think we have between 5 to 7 years before we worry about her losing night vision.”

Many of their current bucket list items include activities that are done at night. Several weeks ago, they took a trip to a nearby observatory, where they received a private tour from members of the center’s astronomy club.

“It was extra special. She still talks about the big telescopes,” Myers said. “It might be hoping for a lot, but I hope it sticks in her head for when she’s older.”

The parents ultimately want to do things like visit such places as Niagara Falls and the Grand Canyon. Lizzy also is “a bit of a rock hound” so Myers said a fossil dig in the Dakota states could also be a possibility.

“She’s five, so aside from Tinkerbell and the Little Mermaid, there’s not a whole lot of suggestions she has of what she wanted to see,” Myers said.

Myers said he and his wife hope to wait “as long as humanly possible” to tell their daughter about her disease so she doesn’t try to limit herself in the future.

“We are hoping and praying for a cure to this,” Myers said, admitting he thinks his daughter will figure it out on her own eventually.

Until then, they will keep repeating activities and trips to place they want Lizzy to be able to see as clearly in her mind as if it were in front of her.

“I hope she will think back and remember catching lighting bugs with Dad and her little sister. And she seems to like the stars and the moon, so I think that’s going to be a big part of her memories, too,” Myers said.

During a recent trip to a nearby mountain range, Lizzy and her little sister took bottles of bubbles with them.

“The wind was blowing just right,” he said. “We had hundreds of bubbles flying in the air. They just loved it. I hope things like that will mean the most to her.”

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