Going for the Gold:

Swimmer with CMT Makes a Splash

by Maria Frederick

I eagerly await my first meeting with Kelsey Butler, a teen with Charcot-Marie-Tooth disease (CMT), who won 13 gold medals and was named Junior Athlete of the Year at the international 2006 Endeavor Games for athletes with disabilities.

I’m interested to learn how Kelsey achieved such success, given that CMT weakens and atrophies muscles in the hands, arms, legs and feet. It turns out the winning formula is a little ingenuity and a lot of hard work.

True Ability

The Butler family arrives at the Mexican restaurant where we’re meeting. Kelsey, 14, wears dangling silver earrings and a penny suspended from a multicolored string around her neck. Her hair is pulled into a bun, and dark green sunglasses nest on her forehead. She’s accompanied by her mother, Tammy, younger sister, Zoe, and father, Kelly, who wears a T-shirt proclaiming: “Don’t let your disability hide your true ability.”

Kelsey Butler at the pool

Kelsey, of Allen, Texas, has been swimming for eight years with the City of Plano swim team, practicing Monday through Friday from 6:30 a.m. to 8 a.m., and one hour on Saturdays. On average, she swims 4,000 meters a day; for you gym members, that’s 160 laps in the pool.

In June, she joined more than 300 athletes to compete in the Endeavor Games in Edmond, Okla. Athletes hailed from 28 states and three countries.

Amidst the activity and excitement, Kelsey proved herself a true champion. Competing in archery, shooting, discus, shot put, javelin, basketball and swimming for a total of 14 events, she earned a gold medal in every event except 3-on-3 basketball, where she brought home a silver.

Like similar athletic competitions, the Endeavor Games rate athletes based on their disabilities. On a scale of one to 10, with one being most disabled, Kelsey is a nine. “In the overall scheme of things, she’s one of the least disabled,” says her mother, Tammy.

But swimming is hard on her ankles due to her CMT, Kelsey says.

In response, her coach devised a new, legal kick for her to use during the breaststroke that takes some of the stress off of her ankles. “It means a lot to me that he’d take the time to figure that out,” she says.

The family recalls two swimmers at the Games, one a frail 15-year-old who weighed no more than 35 pounds but resolutely managed to finish 50 meters (two laps), and another who had lost one arm and both legs at the knee.

“You’re so busy thinking, ‘How in the world can someone do this?’ that you forget about your own problems,” says Tammy.

“It really puts things into perspective,” adds Kelly.

Kelsey’s goal is to make it to the 2008 Paralympic Games in Beijing. Events like the Endeavor Games help her to clock her swimming times and compare them with the competition. Her times are good enough that she’ll most likely qualify to enter the U.S. Paralympic Swimming Trials, from which Paralympic Games participants are selected.

Mentors and Motivators

During the Endeavor Games, Kelsey met Erin Popovich, the event’s motivational speaker and winner of seven gold medals at the 2004 Paralympic Games in Athens.

Erin, one of Kelsey’s role models, showed athletes some of her training drills. “That was really neat,” Kelsey notes.

Kelsey with Sgt. Daryl Eddings

In addition, 16 U.S. soldiers who had been wounded in Iraq or Afghanistan attended the Endeavor Games. Kelsey was paired with 1st Sgt. Daryl Eddings, an Army National Guardsman who served in Iraq.

“Luckily he’s from Dallas,” says Tammy. “So we’ll be able to keep in touch.”

Eddings, a Purple Heart recipient, explains that he’s Kelsey’s motivator. “As a part of Operation Wounded Warrior, I’m her mentor. And between the both of us, we make a perfect team.

“We’re Texans taking care of Texans,” he continues. “I made a promise to her that I’ll be there for her and continue supporting her through her career and even through the Paralympic Games.

“I am a new voice for her at the Games,” he states firmly. “She’s gonna represent Texas and she’s gonna represent the United States very well. And I’ll be there beside her. I know what second chances are as well as the ability to win and survive, and Kelsey’s got em.”

And for Fun…

Active in her church, Kelsey has attended two mission trips and participates in Special Friends, a program that allows parents of children with disabilities to leave their kids with students for one Saturday a month. The students play games and watch movies with the kids, usually on a one-to-one basis.

Kelsey enjoys scrapbooking and shows me the book she’s putting together for this year’s Endeavor Games. The binder is filled with pictures of people she’s met and event schedules and times.

From left, Kelly Butler, Zoe Butler, Daryl Eddings, Kelsey Butler, Marcus Eddings, Colin Cutter, and Colin's friend Jacob.

“I have to get it done soon,” she stresses. “I have some scrapbooks from two or three years ago that still aren’t done.”

She also mentions that for fun she likes to … swim.

“In the backyard,” her sister says.

“Yeah, just for fun, noncompetitively,” chimes in Kelsey.

Entering high school in the fall, Kelsey plans to continue swimming and being active in church. She also participated in a Triathlon this summer in Arkansas with her sister and cousin: Kelsey swam, her sister biked and their cousin ran.

“It’ll be my first time in open water,” says Kelsey. “I’m hoping that no one runs into me!”

“Oh, she’ll be in the top 10 percent of the swimmers,” says Kelsey’s father confidently.

And I’m confident that in 2008, I’ll be meeting again with Kelsey Butler and her family -- this time to hear about her trip to China as a Paralympic athlete.

Maria Frederick, 20, is MDA’s 2006 Dallas Regional Public Affairs Coordinator and a student at the University of Texas at Austin.