NEWS

Family helping Lizzy Myers, 5, see world before blindness

Kaitlin Durbin
Reporter

BELLVILLE – Even with a dimming filter the glow of the moon lit up Elizabeth Myers’s face as she peered into giant telescope Big Blue at Warren Rupp Observatory Tuesday night.

After many nights of star gazing in her backyard, the curious five-year-old was anxious to see more than what the naked eye alone allowed.

“It was big, giant, round,” Lizzy described the moon, stretching out her arms on either side as far as they could reach. “It has holes in it.”

The moon and the stars weren’t the only things in Lizzy’s reach Tuesday. The Richland Astronomical Society gave her and 4-year-old best friend Addison Schroeder a view of Saturn, as well.

Lizzy Myers, 5, views the moon using a Richland County Astronomical Society member’s telescope at Warren Rupp Observatory. Myers’ parents are helping her view the wonders of the world before a genetic condition takes her eyesight.

“I see it, I see it,” Lizzy shouted, jumping up and down. “It looks like an oval that’s colored all in.”

Members of the astronomy society explained Saturn’s rings, which Lizzy summarized as “rings, like the ones you wear on your finger.”

When not looking through a telescope, Lizzy held her hands cupped to her eyes as if looking through binoculars.

“Oh, oh, looky up there,” she would shout, pointing to a star or a red flashing light designating airplanes traveling the night sky.

Those are the sounds of curiosity and awe Lizzy’s parents Steve and Christine Myers never tire of hearing. They represent memories they hope Lizzy takes with her if the day comes where her world goes dark.

Five-year-old Lizzy Myers, right, and best friend Addison Schroeder, 4, explore various rocks during their visit to Warren Rupp Observatory. Myers’ parents are helping her view the wonders of the world before a genetic condition takes her eyesight.

Lizzy was recently diagnosed with Usher Syndrome Type II, a rare genetic condition that causes hearing and progressive vision loss, and can result in blindness.

Their wide-eyed daughter already has experienced mild to moderate hearing loss, managed through the use of a hearing aid, Christine said. But, if doctors are correct, she’ll start to lose night vision and experience tunnel vision by her teen years. Eventually, she could lose all sight.

It’s not a matter of if she’ll lose part of her eyesight, but when, her parents said.

“About five to seven years is our window to get her out and about to see things, especially at night,” Steve said. “Otherwise, it would be too late to do things like this (view the night sky) or catch lightning bugs.”

Lizzy Myers views the moon through a telescope at Warren Rupp Observatory on the grounds of Hidden Hollow Camp in Bellville. Myers was diagnosed with Usher Syndrome Type II, which causes partial hearing loss and may lead to blindness in her teen years.

Viewing celestial bodies is just one of the many sights the Myerses hope Lizzy gets to experience. They’ve created for her a visual bucket list that includes major tourist attractions like the Northern Lights, the Grand Canyon, Niagra Falls and Yellowstone. But the list also includes simple wonders, like the night sky and sunsets on the beach.

Lizzy isn’t aware of her condition yet, so she’s just enjoying the ride. When the astronomical society told her she was going home with her own Celestron FirstScope telescope, a quick “yes” and an excited hop was her reply.

“That’s what we’re all about, laying out the red carpet,” club member Robert Kreiling said.

Lizzy Myers, center, takes in the enormity of Warren Rupp Observatory’s giant telescope Big Blue. The scope features a 36-inch lens.

Lizzy’s journey initially started with bilateral hearing loss, diagnosed over a year ago.

Her doctor recommended testing for the seven most common types of hearing loss, all of which came back negative. He urged for further genetic testing, which the Myers initially denied, trying to spare Lizzy further poking and prodding.

Now, they’re thankful they went through with it.

“If they hadn’t pushed us for genetic testing we would never have known what’s to come for Lizzy,” Steve said. “Then it would have been too late.”

The Myerses hope their story encourages other parents to heed the signs and get their children tested so they can start their “visual bucket list,” as well. They know of at least one other Richland County family dealing with the same condition.

“It was almost one of the biggest mistakes,” Christine said. “I don’t want another family to miss out on this.”

Richland County Astronomical Society member Dan Everly shows Lizzy Myers and her family the 200-plus satellites in geosynchronous orbit, as viewed through the app Satellite AR.

There are ongoing studies at Boston Children’s Hospital in Massachusetts that may help Lizzy down the road, and she may even participate at one point, her parents said. The Usher Syndrome Coalition also pushes research and provides support to families dealing with the condition.

But their main goal is not to bank on a cure, but to celebrate the gift of sight she still has.

During Lizzy’s visit to the observatory, housed at the Friendly House’s Hidden Hollow Camp in Bellville, the astronomical society also indulged her “rock hound” side, as titled by her father. It’s not uncommon for the two of them to spend time in the garage picking fossils using dentistry tools, he said.

Lizzy and Addison took turns exploring 15 rock samples the society had on hand.

One of the rocks was very special, society President Mike Romine told the girls, handing them a large, bumpy chunk of rock with orange and white specks on it.

Lizzy Myers called the moon “big, giant, round” after viewing it through telescope Big Blue at Warren Rupp Observatory. Her father, Steve Myers, said the 5-year-old is interested in all things science.

He waited until after they each took a turn holding it, sometimes bringing it up close to their face for a better view, to tell them it was actually fossilized dinosaur poop. “I’m not touching it,” Lizzy said, horrified, shaking her hands in disgust.

“That’s one of the things that hurts the most,” Steve said. “She’s so visual.”

kdurbin@gannett.com

419-521-7205

Twitter: @njKaitlinDurbin