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E-mail This StoryKelsey Butler lives life at a hectic pace. But for at least one week during the summer, she gets to slow down and relax.
During the school year the 15-year-old achieved National Junior Honor Society status, stayed active in her church’s youth ministry and swam for her school and club teams.
It was a welcome relief Sunday when she got to leave for the Muscular Dystrophy Association’s Summer Camp.
“I like the camp because it gives you the chance to do things that normal kids would do at your own pace,” she said. “The counselors sit back and stay with you — everyone gets to do what they want to on their own time.”
For one week each summer, Camp John Marc in Meridian, Texas, welcomes North Texas youths with muscular dystrophy. The camp is designed for those with special needs: stone paths connect most of the facilities and ramps allow easy access to boat docks and the pool, which is covered in a layer of rubber padding.
“I like the pool time because most of the older kids go at the same time and it gives us an opportunity to hang out,” Butler said. “It’s nice for every member of the family to get away and have their own time. This is definitely the highlight of my summer.”
Butler will swim at camp, but she’ll also go horse-back riding, canoeing, practice archery and take photography classes. The camp hearkens back to sites built during the 1930s with its stone walls and shiny corrugated metal roofs. The dining hall looks like a grand hall with metallic cactus chandeliers setting the southwest mood.
Butler was diagnosed with Charcot-Marie-Tooth (CMT) disease, a neurological disorder, at the age of 5. Although the symptoms of the condition may vary slightly from person to person, for Butler it means weakened lower extremities and hands.
“My muscles deteriorate. When an able-bodied person works out, their muscles normally contract and then get bigger than they were before,” she said. “Mine — if I overwork them — they don’t get bigger than they were before; they just get smaller. There’s a fine line that I have to watch constantly when I work out.”
Butler said she works out a lot. She started swimming when she was 6 and started competing against able-bodied swimmers when she was 9. She said she was in the pool about four hours a day training during the fall and has since cut back to an hour and a half.
“I’m going to a lot of different meets, leading up to the Paralympics trials in April (2008). I’m hoping to make the (U.S. Paralympics’) Beijing team,” she said.
The Paralympic Games, for physically disabled athletes, take place a few weeks after the Olympic Games at the same location. She was elected to attend the National Paralympic Training Academy in Colorado Springs. She also participated in the Endeavor Games, which is in the spirit of the Paralympics, and won nine medals in swimming, basketball and track and field events.
Since the muscles on the outside of her foot are weaker, Butler rolls her foot when she walks and has had a tendon transfer surgery on her right ankle to help. She wears plastic braces occasionally to help support her weight, which help “tremendously.” She also uses a wheel chair when needed, like at camp when the heat and walking tires the counselors.
Butler’s father is a CPA and her mother, Tammy, is a local school teacher. Her one-year-younger sister, Zoe, is also an athlete, specializing in triathlons.
Butler said it was easier for her family to adjust to her condition since her father also has CMT. Kelly, her father, was diagnosed when he was 16.
“The biggest thing we get from MDA is the hope for the cure,” Kelly said.
Keep up with Kelsey Butler at her Web site, www.kelseybutler.com. There are links on her site to learn about Charcot-Marie-Tooth disease and MDA.
Contact Troy Brakefield at tbrakefield@acnpapers.com
