2005 Kids Speak Up! Participant Biographies

Amber Lyn Bendele

Age: 12, Grade: 7

Andrew Bendele

Age: 10, Grade: 4

Western Ohio

Epilepsy has played a powerful role in the lives of the Bendele family. Of the four Bendele children, two have epilepsy.

Amber was diagnosed at age 6. Amber is extremely photosensitive with intractable epilepsy and has experienced great difficulty in controlling her condition. Amber's brother Andrew, has a less severe form of the illness and has been successful in maintaining seizure control through medication. While the siblings are disappointed there is no cure for their shared illness, they are both grateful to those who dedicate their time and money to the education and research of epilepsy.

As an advocate in the 2005 Kids Speak Up! program, Amber hopes to increase understanding that children with epilepsy deserve the same chances as everyone else. She would like her peers to know what it really means to have epilepsy and how frightening unexpected seizures can be. Amber's goal is to advocate that epilepsy does not change who a person is on the inside, and that she, just like other children, enjoys riding bikes, swimming, watching TV and playing games.

Andrew, also a participant in the 2005 Kids Speak Up! program, is already an active advocate in his community. Andrew's positive attitude and open dialogue about his condition has been an inspiration to his teachers and peers. Andrew speaks openly with his classmates about epilepsy and is eager to raise his voice in Washington, D.C.

Andrew and Amber's parents hope the Kids Speak Up! program will encourage their children and others with epilepsy to believe that, despite their disorder, they can accomplish anything they set their minds to do.

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