CMT child athlete story - Dallas Morning News

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Glowing under

There's more beneath surface for XXX 11-year-old

06/27/2003

By TIM MacMAHON / The Dallas Morning News

Kelsey 's smile can brighten a room.

Nothing makes that smile turn upside down faster than when people focus

on the braces she wears on her feet and lower legs. , an

11-year-old XXX resident, suffers from Charcot-Marie-Tooth, a

progressive neurological disease that affects muscles primarily in

extremities such as the lower legs and feet. People look at my braces,

and they see that and not me, " she said, tears welling in her eyes.

" They just

see my braces. "

That isn't a problem at the pool, where substitutes a pair of

flip-flops for the braces. , who started swimming soon after being

diagnosed with CMT at age 5, competes with the City of XXX Swimmers.

Because of her disability, can't dive off the starting blocks or

perform certain turns. However, she swims every stroke and participates

in every event 400 meters and shorter.

" I didn't even know that she had a disability until her mom told me, "

COPS assistant coach Semrau said. " I don't make any exceptions for

her. She does just fine.

" In fact, she usually leads the lane. "

Added Mike Wang, another COPS assistant: " She's an athlete. She can go

out there and do things a lot of 11- and 12-year-olds can't. "

The highlight of 's athletic career came at the Endeavor Games,

for athletes with physical disabilities, this month in Edmond, Okla. She

medaled in every field and swimming event she entered, winning 18 golds

and one silver.

In an impressive display of endurance and dedication, won the 14

swimming events she entered, although she had little time to rest

between events. She was also less than three months removed from

breaking her ankle when she slipped while walking on the side of the

pool.

" I was so excited, " said of her success. " On the inside, I was so

happy. But on the outside, I was crying because my back and shoulders

hurt so bad. But all of the pain was worth it. "

has participated in sports other than swimming, only to

experience frustration. She gave up gymnastics when she was young

because she had difficulty keeping her balance. As a softball player,

she could hit for power, but her lack of speed usually limited her to

singles. She quit softball after she suffered a broken bone in her knee

when her cleats got caught in the dirt and her leg braces didn't give.

People who suffer from CMT often have poor balance. An abnormal gait and

frequent tripping or stumbling are other common symptoms.

" Swimming's just the one sport where she feels like she can compete and

look like everybody else, " said her father, .

Doctors at ish Rite Children's Hospital, where Kelsey receives most

of her medical care, told her family that swimming is also one of the

best activities for her. It allows her to exercise without putting

stress on her joints, minimizing the risk for injury.

" It's so good for her physically, " said her mother, Tammy . " We're

just real lucky that she loves it so much. "

has always been drawn to water. She spends almost every day

during the summer swimming in the family's pool with her younger sister,

Zoe.

As a kindergartener, became fascinated with dolphins and decided,

with help from her mother, that she wanted to become a marine biologist.

Her bedroom is a shrine to dolphins, with a mural and posters on the

wall, stuffed animals on the bed and figurines on the shelves.

has trouble putting her fondness for water into words, shrugging

and saying that she's a fish. Her favorite poem, " When I'm in the Water "

by Millen, explains it for her.

The final stanza:

No braces! No chairs!

No whispers or stares!

When I'm in the water,

I'm really just me!

When I'm in the water,

You only see me

KELSEY BUTLER

Age: 11 Hometown: XXX

School: Entering sixth grade at XXX Elementary

Family: Mother, Tammy; father, ; sister, Zoe, 10

Career aspiration: To become a marine biologist

Hobbies: Swimming, watching Disney movies, playing computer game Tycoon

Zoo, collecting dolphin trinkets

Notable: Won 18 gold medals (14 in swimming events) at Endeavor Games,

an athletic competition for disabled athletes this month in Edmond,

Okla. ... Diagnosed with neurological disease Charcot-Marie-Tooth at age

5. ... Father, , was diagnosed with CMT at age 11. His condition

hit a plateau when he was 16.

CHARCOT-MARIE-TOOTH

The progressive hereditary neurological disease known as CMT affects

approximately 115,000 Americans. It is rarely life-threatening or

affects the brain, but it causes damage to peripheral nerves. The damage

causes muscle weakness and wasting, and some loss of sensation in the

body's extremities, such as the feet, lower legs and hands. A common

symptom is foot drop, which is caused by weakness in the ankles and feet

and forces toes to point downward during walking. There is no known cure

for CMT.

Source: www.mdausa.org

Online at:

http://www.dallasnews.com/sharedcontent/dallas/collin/youthsports/stories/062703\

dnspobutler.22011.html

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