This Iowa teen losing her hearing and sight wants to see the world while she still can

MANSON, Ia. — It wasn’t until last year that Alexis Myers, then a seventh-grader, was so bold as to stand up in front of her classmates and describe in detail what is wrong with her.

Science teacher Jessica Waller had assigned her students to study a genetic disorder and deliver a report. Alexis was the only one who chose herself as a subject: her OPA-1 genetic mutation.

Alexis calmly paged through her PowerPoint presentation, projected on the whiteboard at the front of the classroom. She didn’t waver or shed tears.

“This is something she has lived with all her life,” Waller said. “She knew about it, and she wanted other people to know about it too.”

Alexis patiently explained how she had begun to lose her hearing before kindergarten. How then her eyesight weakened. How she also lost some of her balance. How this disease had lingered unrecognized in her father's family for generations. How her grandmother has faced many of the same symptoms.

This was a big step. Back in fourth grade, before cochlear implants improved her hearing, Alexis was a confused, angry and isolated girl. Instead, here was a confident Alexis, intent on forging ahead into her adult life despite her disabilities.

Classmates Alexis Hanson and Ashley Strandberg were interested to hear their friend open up about her hearing loss. Alexis even passed around the external pieces of her cochlear implants for everybody to examine. But apparently she did use too many big words.

“I understood it, like, halfway,” Hanson said, giggling.

“She’s like a normal person to us," Strandberg said.

Although Alexis, 15, was willing to explain her condition, she doesn't want to live as a daily curiosity among her friends.

When it comes to her disease, Alexis said, “usually we avoid the topic."

Mom serves as her backup

As Alexis finished eighth grade this past spring, her mom, Kristin Patrick, is nearby, providing another set of eyes and ears for her daughter in the classroom.

Every little noise — a whirring fan, the hum of the heater, a phone ringtone, the gossipy buzz of students — can make it difficult for Alexis to hear.

So Alexis and her mom stay connected via shared Google documents and instant messages. Kristin usually tucks herself in a back corner, as much out of sight as possible. She balances a laptop computer on her knee and taps away on the keyboard so she can provide backup notes.

Each teacher, meanwhile, wears a headset that transmits directly into Alexis' cochlear implants.

Kristin drives all three of her kids to school — also Andy, 11, and Emily, 9 — and then stays there. This was her fifth year as a paraeducator, but her first year working with Alexis. Before that, she operated a day care out of the family home that she shares with her husband, Alexis' stepdad, Aaron Patrick.

At the start of a school day this spring, mom and daughter wind their way through the hallways to Julie Weidauer's room, to spend a first-hour study hall.

Weidauer is a high school special-ed teacher, as well as Alexis’ junior high track coach.

Despite her fading eyesight, Alexis is an accomplished runner who loves track and cross-country.

"It doesn’t involve balls,” she explained. “I don’t like getting hit in the face.”

Alexis' cross-country coach and art teacher, Theo Clark, is one of her biggest fans. Alexis always wants to exceed expectations, he said. Last fall, she finished in the top half and often top quarter of each race.

"Every time I think about it, I get a little bit down,” he said of Alexis’ disease. “Because of the potential she has as a human being, knowing that’s going to be hindered by her condition. She’s hungry for life.

"It tears me up."

The morning at Manson Northwest Webster School begins with a ritual in which teacher Mike Richman pulls all the students into the hallway for a pep rally. Everybody claps in unison, and then Richman unleashes a motivational life lesson. He argues that the simple act of making your bed each morning can improve your outlook on the entire day.

“Small changes over time," Richman insisted, "will yield unconquerable results."

Alexis knows all about small, incremental change, but much of hers has been in the wrong direction.

Therapy staves off balance issues

Later in the school day, Alexis and her mom retreat to a windowless storage room beneath the gymnasium bleachers. The long, narrow space serves as an office for the P.E. teacher but also holds everything from basketballs to cross-country skis.

This is a refuge where Alexis can run through exercises that help her stave off the clumsiness that's just one of the symptoms of her dominant optic atrophy. She does the exercises regularly.

Alexis has been known to suddenly tumble out of her chair and flop onto the floor while sitting in the middle of class. Balance issues are not constant, so she is able to run track and cross-country.

She tells a favorite embarrassing story about how she sprayed hot chocolate in every direction when she stumbled on the stairs.

Beneath the bleachers, she takes humble steps to fight back against the physical decay triggered by her genes. She slings a PVC pipe across her shoulders to help maintain an upright, straight posture. She steps onto a small plastic platform and tries to balance on one foot, then the other.

It sounds simple, but this is part of crucial physical therapy for Alexis. And it's not easy. She raises each leg with a slow, deliberate motion as if she's balanced on a narrow beam, not a flat surface.

Later, she and her mom toss a volleyball back and forth.

One of the only people usually privy to these sessions is close friend and classmate Angelina Gant.

“I think it must be really hard for her," Angelina said, "especially at her age now."

Once Alexis finishes her exercises, the three walk back through the hallways.

They stroll past posters that advertise a spaghetti supper to raise money for Alexis and her family. An ominous sentence stands out: “Her prognosis estimates she will be blind by the time she is 17.”

Doctors can't say that for sure. But they also can't guarantee that she won't lose her eyesight.

She focuses on seeing the world

After her diagnosis three years ago, Alexis began to focus on what seemed to her the perfect way to defy her disease: travel. Visit the world while she still has eyesight.

So her family set up a traveling fund and intends to help her see as much of the world as soon as possible.

This plan for Alexis to seize her remaining years of sight has inspired her school and community. People have reached out to help.

Alexis also raised about $4,000 on her own by selling handcrafted jewelry, homemade dog treats and other items. The money will help pay for a trip to Germany in August as part of a foreign exchange and camp organized by the Lions Club.

But first, money from the spaghetti supper will enable Alexis and her family to fly to France and Great Britain at the end of July. That trip will allow her to realize her dream of visiting Paris.

Alexis also wants to trek to Finland to see the northern lights, renowned as one of the most beautiful, shimmering scenes for any pair of eyes.

In some ways, this is an escalation of what has been a habit for Alexis and her family in recent years, embarking on vacations to South Dakota, Universal Studios, Texas, San Diego, Jamaica and the Grand Canyon. Photos from these trips fill the walls of the Patricks’ ranch home. Alexis and her siblings always seem to be smiling.

These travels have been a source of joy and freedom for Alexis: wonderment. The thrill of discovery.

Burdened with more uncertainty than your average teenager, she seems compelled to roam and explore with that much more fervor.

The other journey that Alexis must travel as her disease manifests itself is an internal test of will.

Her parents have purchased Braille books, but Alexis hasn’t yet begun to learn to read them.

“For sure, it’s going to make her learn patience," her father, John Myers, said of her challenges to come — challenges his mother also has confronted. "She’s going to go through a time when frustrations are just going to kick her butt.”

Jennifer Johnson is a friend whose Fort Dodge-based charity, It Gets Better Fort Dodge & Beyond, has helped raise money for Alexis and her family.

“She’s got the sweetest little voice,” Johnson said, “the sweetest heart with a fiery soul.”

Johnson is convinced that Alexis’ journey will inspire others.

"She is not a quitter.”

Another girl fights the mutation

Alexis' story already is traveling.

A woman named Lindsey Allen in Pennsylvania heard about Alexis and reached out to her. This year, Allen founded the Autosomal Dominant Optic Atrophy Association.

Like Alexis' father, she’s a parent who unwittingly handed down the genetic mutation to her child, Sophia, 6.

“She wouldn’t look directly at you,” Allen said of the symptoms she spotted from an early age. “She would look above you or to the side."

The United Mitochondrial Disease Foundation and Hereditary Neuropathy Foundation include the disease on their fundraising agenda, but Allen wanted to launch a dedicated effort to push for a cure. Three leading physicians are on her medical advisory board.

"Throughout the process, I want to make sure I’m going to be giving the money to who’s the most progressive at the time at the research," she said.

That's welcome news for Alexis' family.

"I’m still hoping that at some point, they’ll call and say, ‘Hey, let’s try this,’” John said of his hope for a cure.

The pediatric ophthalmologist in Iowa City who diagnosed Alexis, Dr. Arlene Drack, said researchers are working to develop a gene replacement to regrow patients' damaged nerves.

"We have way more hope that it will be within her lifetime than (we did) 15 years ago," Drack said, "when we didn’t have any positive trials."

Meanwhile, the white walking cane waits in the corner of Alexis' bedroom.

Grandma, also blind, believes in her

Alexis and her family put her disease in perspective: Dominant optic atrophy is not terminal. Many kids confront more tragic, life-threatening diseases.

Alexis' grandmother, Sherri Myers, 60, who has similar blindness and hearing loss, has carved out a fulfilling life in Humboldt and still manages the local farmers market. She believes her granddaughter will thrive.

“She’s going to take over the world,” Sherri said, “even though she has her challenge. Alexis will handle whatever’s thrown at her. No doubt in my mind ever.”

Sherri can’t see the face that sits across her kitchen table. She also can’t predict the future any better than her granddaughter's doctors, who still lack certainty about when and how this genetic mutation will play out in Alexis' life.

But she has walked a path that Alexis may follow.

Then there's Helen Keller, an American icon whom Alexis once portrayed in a school report.

Keller was born in 1880 in Alabama and became the first deaf and blind woman to earn a bachelor’s degree. She starred on the lecture circuit, collected numerous awards and met with nearly every president in her lifetime. The story of how she learned through her sense of touch to communicate with teacher Anne Sullivan became a historical symbol of tenacity.

What may Alexis be inspired to do once she sees the northern lights or the real Eiffel Tower, not the model that sits on a shelf in her bedroom?

If she contemplates raising a family, will there be a cure for the genetic disease that Alexis could pass on to her children? That's a heavy topic that Alexis has yet to fully ponder. In the words of her stepdad, she's focused on "the little stuff for now."

She's launching into high school with a stronger sense of purpose than most of us had at that age, or perhaps at any age.

Maybe that's the ultimate story of Alexis: Her life isn't a tragedy in slow motion. She's an inspiration in perfect focus.

How to help

Alexis Myers and her family set up Alexis' Traveling Fund at gofundme.com. It has reached about half its goal of $5,000. 

It Gets Better Fort Dodge & Beyond, an "independent advocacy youth empowerment organization," also has raised traveling money for Alexis. The charity can be reached at itgetsbetterfdandbeyond.com or at igbdfdandbeyond@hotmail.com. 

The Autosomal Dominant Optic Atrophy Association is a nonprofit founded this year in State College, Pa., by a mother whose 6-year-old daughter is stricken with the genetic disease. The organization, guided by an advisory board of doctors, accepts donations through its adoaa.org website. For information, call 570-419-8799, or email founder Lindsey Allen at lindsey.allen@adoaa.org. All donations fund awareness and medical research. None of the money goes to the family, Allen said.

ABOUT THIS SERIES: Alexis Myers, 15, has spent most of her young life trying to figure out what lurked in her medical history to diminish both her hearing and eyesight. She enters high school not knowing how much she’ll be able to see and hear by the time she graduates. This series in three parts looks at how an entire family finally pieced together its medical puzzle.

Read the Register's three-part special series:

• CHAPTER 1: An Iowa girl’s world starts to dim
• CHAPTER 2: Another little girl’s pain offers clue
• CHAPTER 3: Despite unknowns, the world beckons