How swimming lets Sugar Grove teen with alopecia be herself

  • Leah Hayes beams as she shares the story of how she met John Cena on the red carpet of a Sports Illustrated awards banquet in Los Angeles this past December.

      Leah Hayes beams as she shares the story of how she met John Cena on the red carpet of a Sports Illustrated awards banquet in Los Angeles this past December. Patrick Kunzer | Staff Photographer

  • At age 13, swimmer Leah Hayes of Sugar Grove holds six national age group records and dreams of competing in the 2024 Olympics, even as she deals with alopecia universales that caused her to lose all her hair

      At age 13, swimmer Leah Hayes of Sugar Grove holds six national age group records and dreams of competing in the 2024 Olympics, even as she deals with alopecia universales that caused her to lose all her hair Patrick Kunzer | Staff Photographer

  • Leah Hayes was named the Sports Illustrated Kids 2018 SportsKid of the Year.

      Leah Hayes was named the Sports Illustrated Kids 2018 SportsKid of the Year. Patrick Kunzer | Staff Photographer

  • Leah Hayes hid her baldness from many classmates until she stood in front of her fourth-grade class, announced she had been wearing a wig and explained why she didn't have hair. "It was nerve-wracking and very emotional, but after everything, I was just over the top with joy," she said.

      Leah Hayes hid her baldness from many classmates until she stood in front of her fourth-grade class, announced she had been wearing a wig and explained why she didn't have hair. "It was nerve-wracking and very emotional, but after everything, I was just over the top with joy," she said. Patrick Kunzer | Staff Photographer

  • "It's just a fun experience for all of us to take everyone, not just Leah, along with this journey she's having," says coach Nancy Hooper, second from right. "She's making other kids have stronger drives and believe in themselves. It's a really great thing to see."

      "It's just a fun experience for all of us to take everyone, not just Leah, along with this journey she's having," says coach Nancy Hooper, second from right. "She's making other kids have stronger drives and believe in themselves. It's a really great thing to see." Patrick Kunzer | Staff Photographer

  • When Leah isn't in the pool, she's always cheering her teammates.

      When Leah isn't in the pool, she's always cheering her teammates. Patrick Kunzer | Staff Photographer

  • "All the accolades she's received will make you amazingly proud, but we're even prouder of the way she's able to handle it," Leah's dad, Tim Hayes, says. "She loves to win. She just loves the sport of swimming more."

      "All the accolades she's received will make you amazingly proud, but we're even prouder of the way she's able to handle it," Leah's dad, Tim Hayes, says. "She loves to win. She just loves the sport of swimming more." Patrick Kunzer | Staff Photographer

  • Courtesy of the Hayes familyLeah Hayes stands with John Cena on the red carpet during a Sports Illustrated awards ceremony in Beverly Hills in December.

    Courtesy of the Hayes familyLeah Hayes stands with John Cena on the red carpet during a Sports Illustrated awards ceremony in Beverly Hills in December.

  • Leah Hayes, 13, of Sugar Grove stands with her older brother, Carter, during an award banquet in Beverly Hills, where she was honored for being Sports Illustrated's SportsKid of the Year.

    Leah Hayes, 13, of Sugar Grove stands with her older brother, Carter, during an award banquet in Beverly Hills, where she was honored for being Sports Illustrated's SportsKid of the Year. Courtesy of the Hayes family

 
 
Updated 2/23/2019 4:31 PM

Leah Hayes is never so free as when she's in the pool.

She's never so excited as when she hears the crowd cheering, the water splashing, the results being announced from the race before hers.

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She's never so empowered as when she's diving off the starting block and counting her strokes, pushing herself to beat not only the other swimmers but her own times.

At 13 and almost 5 feet, 7 inches tall, Leah has realistic dreams of making an Olympic Trials cut next year -- and eventually of making the U.S. Olympic team. The blue-eyed Sugar Grove teen has broken a handful of national age group records, regularly qualifies for high-level meets and recently was named Sports Illustrated's SportsKid of the Year.

Leah loves to win, but her drive comes from more than the records and the accolades.

It's the support she gets from her teammates and coaches. It's the feeling of true acceptance, of having a safe place where everybody thinks of her as a swimmer and nobody thinks twice about the fact that she's bald.

Living with alopecia

It was right around the time Leah started swimming that she began to lose her hair.

As a 6-year-old, she found it difficult to process the reality of her alopecia universales diagnosis, which meant she soon would be completely bald. In just four months, she lost all the hair on her scalp and body.

                                                                                                                                                                                                                       
 

For the next few years, Leah wore wigs to hide her condition from most of the world. But they were "super-duper uncomfortable," she said, and she couldn't shake the feeling she wasn't being genuine.

So one day, Leah took a deep breath, stood in front of her fourth-grade class, announced she had been wearing a wig and explained why she didn't have hair.

Her classmates didn't laugh, didn't scoff. Instead they wrote her cards of support and told her they hoped for a cure.

"I felt like I wasn't being honest with my class and being who I truly was," she said. "It was nerve-wracking and very emotional, but after everything, I was just over the top with joy."

The one group from which Leah never hid her alopecia was her swim team, the Fox Valley Park District Riptides. Her teammates, some of whom became her closest friends, helped her embrace what makes her unique.

                                                                                                                                                                                                                       
 

"They definitely made me more comfortable with myself," Leah said. "I feel respected because I can just walk around bald, and people won't take second looks. They won't stare at me."

Having a hydrodynamic edge over competitors who wear swim caps doesn't hurt, either, she said, smiling.

Still, she's a teen and there are times when she feels self-conscious, perhaps because of a rude comment or a rough day at school. Her parents and coaches offer words of encouragement, she said, but she typically prefers to spend time alone until she can "suck it up and get over it."

And get back in the pool.

The journey

Riptides Coach Nancy Hooper vividly remembers the regional meet where Leah first qualified for state.

She was an eager, energized 9-year-old who had just started swimming competitively the year before. She wanted to win every race -- and in that meet, she did.

The state competition was a different story. Race after race, Leah failed to reach the podium, and she was increasingly frustrated.

"She's like, 'This meet isn't very much fun,' and I said, 'All in good time,'" her coach said. "I was trying to get her to understand, hey, this is part of the journey."

Not one to resist constructive criticism, Leah returned to the pool motivated to work hard, perfect her strokes and improve her times. She qualified again the next season and won her first state event -- the 50-meter breaststroke -- from an outside lane. The year after that, she swept the state competition.

"She just obviously wanted it. It's one of the things that drives her," Hooper said. "She loves the feeling of winning."

Leah holds six national age group records, the most recent of which are the 400 IM and 100 breaststroke in the 11- and 12-year-old category. She aged up after her 13th birthday in October.

Hooper says Leah now has started competing in national meets in hopes of qualifying for the 2020 Olympic Trials. She wants to make it onto the U.S. Swimming Team in 2024 -- and her coaches believe she can do it.

"My main focus with Leah is to keep her loving the sport and to make her understand the hard work that is absolutely necessary to get that far," Hooper said. "As long as Leah stays focused and puts her energy in the right direction, she has every chance to get on that Olympic team."

The accolades

It's not uncommon for other coaches or teams to take notice of Leah's speed and technique, Hooper said, but she also caught the attention of the Sports Illustrated staff.

First, she was featured in the magazine's "Faces in the Crowd" segment. Then, she was announced as a finalist for its SportsKid of the Year award.

Leah learned she won the title when she walked out of the locker room at practice one day and saw her coach, surrounded by her teammates, holding a large poster with her picture on it. She wouldn't have wanted to hear the good news from anyone else.

"It's just a fun experience for all of us to take everyone, not just Leah, along with this journey she's having," Hooper said. "She's making other kids have stronger drives and believe in themselves. It's a really great thing to see."

Leah's talent has led to trophies, awards and even a red carpet appearance during a Sports Illustrated banquet in Beverly Hills. But she's never been one to pump her fist when she's the first to touch the pool wall.

In fact, her first instinct is to shake hands with other swimmers or console an upset competitor or cheer on a teammate, said her dad, Tim Hayes. When another swimmer is faster, she accepts the loss -- and uses it to fuel her in the next race.

"All the accolades she's received will make you amazingly proud, but we're even prouder of the way she's able to handle it," he said. "She loves to win. She just loves the sport of swimming more."

Leah's world

Some swimmers listen to music to get pumped up before a big meet. Leah plans out the race.

She thinks about when she'll increase her tempo, when she should breathe, how she'll complete a turn. And then she'll walk out of the locker room, upbeat and focused, the determination clear in her eyes.

It's the look of a winner, of an athlete whose work ethic and drive can't be taught, Hooper says.

To her coaches, Leah has become a shining example of what it means to be a successful swimmer and a supportive teammate. She practices at least two hours a day, six days a week, while juggling school, friends, piano lessons and other hobbies.

"She lives an exceptional life," Tim Hayes said, "and she does it with grace and dignity and a smile on her face."

As support volunteers with the National Alopecia Areata Foundation, Leah's parents know how important it is for kids to participate in something that gives them a sense of belonging. For Leah, swimming has been the outlet where she can channel her frustrations, crush her insecurities and build her confidence.

She has become an inspiration to other kids with alopecia, her loved ones say -- so much so that she'll be speaking at the foundation's annual conference this summer in Washington, D.C.

"I think the alopecia has made her a stronger person because she's had to fight those battles along the way," Hooper said. "Swimming has given her the strength to just be free and to feel like, 'This is my world.'"

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