Profile: Get Involved and Don't Give Up

Kayla Prather
by Miriam Davidson on January 1, 2011 - 4:46pm

QUEST Vol. 18, No. 1

When Kayla Prather was 8 years old, she began having trouble with her balance. Her mom took her to a pediatrician, who tested her reflexes and found she didn’t have any.

More tests followed, including one of Kayla’s DNA, and the diagnosis of Friedreich’s ataxia (FA) was confirmed.

Prather, of Hiram, Ga., says the disease didn’t bother her much at first. She still could run around and play with her friends in the neighborhood. But as her symptoms worsened and her ability to get around decreased, she became less social. Now, she says, she has few friends outside of school.

“It’s difficult to go to my friends’ houses or spend the night because their homes are not accessible,” Prather, 17, says. “Even just to go off with my friends is difficult. Usually I will meet my friends at the movies and then maybe go to dinner, but my mom has to take me and then pick me up, and take me to the dinner location because I can’t ride with my friends.”

At school, Prather uses a power wheelchair full time and has a “parapro,” or assistant, assigned to her. “My parapro and I are very close,” she says. “She goes with me to all my classes and lunch. When I am tired, she takes notes for me. I’m out of school a lot and when I am, she attends my classes, takes notes and collects my homework for me. That way I don’t fall behind.”

Prather visits the MDA clinic and a cardiologist for checkups every six months. She is on the drug metoprolol to treat hypertrophic cardiomyopathy, a thickening of the heart muscle that is a common problem in FA (see "Treating the FA-Affected Heart"). She also takes asthma medications, and has been treated for scoliosis and stomach pains.

Her vision is good, but she has slight hearing loss, and her speech is beginning to soften and slur. “I usually end up repeating myself a lot, and sometimes I have to try to speak louder but it tires me out when I do that.”

Prather enjoys reading, surfing the Internet and going to movies. She loves the “Twilight” movies, once even attending a midnight showing. She also is active in FA support groups and awareness campaigns, and has gone door-to-door to raise money for MDA.

She encourages other young people with FA to get involved with support groups and awareness campaigns, and to not give up.

“Remember, we can do most anything that others do, but we just have to learn to do it differently. Keep on persevering — don’t give up!”

The entire In Focus: Friedreich’s Ataxia report, can be downloaded as a printable PDF from this page, as well as from the Friedreich's ataxia disease page.

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