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Folks You Should Know: Kyla Staubus works to raise awareness about epilepsy

September 23rd, 2013 8:47 am by Amanda J. Vicars

Folks You Should Know: Kyla Staubus works to raise awareness about epilepsy

“Here she comes, Miss... ” Persistence, driven by a cause that hits close to her own home. 

Sullivan Central High School student and Bristol, Tenn. resident Kyla Staubus is passionate about pageantry. She holds multiple state pageant titles at present, including: Tennessee National Forestry Queen, America's Natural Supreme Beauty for Tennessee (for the second year in a row) and Unicoi County Cinderella Teen. And, recently, she placed second in the Fairest of the Fair competition at the Appalachian Fair.

“It's a lot of work training,” Kyla admitted.

However, as dedicated as she is, the 17-year-old pageant queen holds even greater fervor for her campaign to raise awareness about epilepsy, a neurological disorder (or seizure disorder) which has affected her younger brother, Devon Staubus, and consequently her entire family, for nearly half her life.

“In 2007, [Devon] had meningitis and it caused him to be epileptic,” Kyla explained. Epilepsy not only affects the person with it but their family and “everyone around them.”

Kyla feels her personal experience with epilepsy is best put to use educating others. Her goal in raising awareness is “to spread it across East Tennessee and help people be more aware of what [epilepsy] can do to somebody and how people have to live with it and what it affects during their lives.”

Epilepsy is a non-age-specific medical condition characterized by disrupted nerve cell activity in the brain, resulting in a seizure. A person is diagnosed with epilepsy after having at least two unprovoked seizures. Seizure symptoms can last anywhere from a few seconds to a few minutes and vary from blank stares (in absence or petite mal seizures) to arm or leg jerks ( in partial seizures) to convulsions or loss of consciousness (in generalized or grand mal seizures).

Epilepsy can be genetic, develop from brain trauma or an infection (as in Devon's case), or occur for no apparent reason at all.

Devon's chronic epilepsy has left him photosensitive and thus unable to be around flashing lights or cameras - he couldn't even attend the fair with his family recently.  Devon must also take daily medications, maintain a special diet and have a service dog by his side, Kyla explained. “It's a lifestyle change.”

Devon and Kyla's mother, Lynn Colley, added, “ It's an everyday challenge... [Devon] has to be in bed by a certain time so, therefore we have to be home at a certain time... There's a lot of things we can't do as a family.”

According to the Centers for Disease Control and Prevention (CDC), an estimated 2.2 million Americans have epilepsy and The Epilepsy Foundation calculates more than 300,000 of those are children under the age of 15 like Devon.

To help others like him, Kyla, and her mother Lynn are actively involved in the East Tennessee Epilepsy Foundation which operates out of Knoxville, Tenn.

Lynn Colley said a lot of patients, especially those at the Niswonger Children's Hospital, “come in with epilepsy and they don't quite understand it.” Our purpose is to educate them  and help them cope with it.

Kyla, persuasive in her individual awareness initiative and with the help of Lynn's husband, Chris Colley, who works with the International Hot Rod Association (IHRA), convinced two drag racing teams to put epilepsy stickers (which Lynn said normally cost between $20,000 to $50,000 a piece) on both sides of their drag cars at no cost.

In addition, Kyla advocates for children suffering from spina bifida, a birth defect caused by the incomplete development of the spinal cord or the tissues that enclose it, resulting in as Lynn Colley described, “very little movement from [the] waist down.” 

Kyla recently helped raise funds to purchase a special hand-crank bicycle for 7-year-old Laura from Bristol through an online pageant fundraiser.

“Then I spent the day with her and treated her like a little princess... she's so cute,” Kyla said smiling. “I did her hair and makeup and we got her a crown, a sash and a dress. We rode in Bristol's Fourth of July parade together.”

Kyla Staubus plans to attend either King College or East Tennessee State University when she graduates high school and hopes to one day enter the Miss America Pageant, for which her platform will undoubtedly be epilepsy/childhood disorder awareness, a cause as close to her heart as it is to her home.

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