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12-year-old Heads to Congress to Speak about Epilepsy Funding

By HERWriter
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In the last four months, Texan Kaylee Smith has raised over $10,000 to fight epilepsy, and she donated the funds to the Epilepsy Foundation of Central and South Texas. Smith began raising money after the death of her 9-year-old brother, Kaden, who drowned during an epileptic seizure in a bathtub.

According to the Epilepsy Foundation, epilepsy and seizures affect almost 3 million Americans of all ages. It is estimated direct and indirect costs of epilepsy costs $15.5 billion. Approximately 200,000 new cases of seizures and epilepsy occur each year and 10 percent of the American population will experience a seizure in their lifetime.

As part of the National Epilepsy Foundation program called Kids Speak Up!, Smith, along with 35 other children, will be going to Washington D.C. to meet with lawmakers about epilepsy funding issues.

"I feel like a lot of people who have epilepsy don't like to talk about it," Smith said. "They see it as something weird."

The Kids Speak Up! program is an opportunity for young people with epilepsy between the ages of seven and 16 to visit Washington with their families to learn about advocacy and to tell Congress about what it's like to live with epilepsy. The group meets with members of Congress to help secure a better future for children with seizures by supporting federally funded medical research, programs that improve access to appropriate care and public health education to reduce discrimination against people with epilepsy.

The seventh-grade cheerleader decided to deal with the pain of losing her brother by fighting for a cure for epilepsy.

In October, 2010, Smith, with the help of family and friends, decided to hold a fundraising 5-kilometer run which was held at the Walsh Middle School in Round Rock.

Additional monies came from selling wristbands that say "Stop Epilepsyʺ
and "I'm OK" which is an acronym for In Memory of Kaden.

According to Sindi Rosales, executive director of the Epilepsy Foundation of Central and South Texas, Smith’s gift is especially welcome because the state has proposed eliminating $1.9 million in funding for the foundation. The funding supports seven clinics in Central and South Texas that provide services for people who are indigent or uninsured.

Smith, who also has epilepsy said, "I'm going to try to defeat it." She was diagnosed at age 9 and her seizures are under control with medication.

In an interview with the Austin-Statesman, she said was surprised about the amount of money she has been able to raise. "I didn't realize that a normal person in everyday life could really make a change," Smith stated.


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