The Washington PostDemocracy Dies in Darkness

This 5-year-old girl will lose her vision to a genetic disease. Her parents want her to see the world first.

Lizzy Myers enjoys an ice cream cone. The 5-year-old, who does not know that she has a genetic disease that will eventually take her vision, looks forward to giving Pope Francis a hug. (Courtesy of Steven Myers)

Elizabeth Myers has seen a lot in her five years: Christmas lights. Disney World. Seven shooting stars.

Next week, she will get to see another awe-inspiring sight: the person she calls “the tall man with gray hair with the big white hat.”

Lizzy will meet Pope Francis, according to her family and a nonprofit organization that helped organize the meeting. And she wants to give him a hug.

She suffers from a genetic disease that will eventually cause her to lose her vision. While she still has her sight, her parents are trying to provide her with every visual experience they can.

Steven Myers, her father, said he and wife Christine can’t wait to take Lizzy to meet Francis next week. “I just hope that whatever prayers he says are heard,” Steven Myers said.

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The Myers have so many prayers for Lizzy: They pray they can show her all the sights on their ever-growing list before Usher syndrome II, which has caused her to need hearing aids from birth, starts eroding her sight, too, in just a few years. They pray that the photo albums they create for her will help her store experiences — such as meeting the pope — in her memory, even though she is so young.

They pray for generous donors to fund research that might someday cure her condition. They pray for a life without limits for their sweet, inquisitive, intelligent little girl.

Lizzy doesn’t know yet about her disease, which will start taking away her vision when she is 10 to 13 years old. “How do you tell a 5-year-old, you know? She’s such a curious little girl, and so much of her life is through sight. I just can’t imagine trying to tell her that,” Steven Myers said. “I don’t want her to be limited by anything.”

The trip to Rome came about when a Turkish Airlines employee in Chicago saw the Myers family on CBS several months ago trying to raise awareness about the condition that affects Lizzy so that other families will get their children tested for the genetic disorder.

The airline offered the family free tickets to any place in the world, Steven Myers said. “Lizzy, she’s one of those kids who likes art, and she likes big things. We thought the artwork in Rome and the big buildings and the sculpture would be something she would really enjoy,” he said.

They also had their Catholic faith in mind when they planned the trip, though they never expected to come face to face with Francis, Steven Myers said. He added, “You know, the idea of being in Rome and being in basically the focal point of our religion — we’re hoping for a miracle.”

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People rushed to make the trip special for the family of four, including Lizzy’s 3-year-old sister, Makayla, who did not inherit Usher syndrome II. The owner of the hotel where the family will stay, the Italian nonprofit Unitalsi and even a former mayor of Rome jumped in to make plans for their two-week vacation — and found the connections that led to the meeting with the pope.

“I’ll tell you, it inspires you, when you go through something like this, to see people want to do so much for Lizzy,” Steven Myers said.

A Vatican spokesman said the Catholic Church never releases details about the pope’s private meetings and referred questions to the Myers family.

Steven Myers said he and Christine have been trying to prepare Lizzy, who has learned about Francis at her Catholic preschool, for the big trip. He asked what she knew about the pope, and she responded that he is tall, the father said. “But a lot of people are tall to a five-year-old,” he joked. “I said, ‘If you saw the pope, you think you would give him a hug?’ She said, ‘Oh yeah, I’d give him a hug!'”

The excitement of their vacation, which will include stops in Venice and Istanbul, helps take the family’s minds off their fears for Lizzy.

“You know, there’s just certain days that it’s almost debilitating when you’re thinking about it,” the father said. “Then you’re trying to rush and get her out to see as much as you can.”

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