On May 14, Orange resident Kelly Bustos will make her way to the Old Grove section of West Haven’s Savin Rock beach. There she will meet with hundreds of others as they ride, run and walk for epilepsy.
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Bustos is co-chair of the fundraising event held for the Epilepsy Foundation. She’s been fighting the disease for 16 years.
“Bustos’s daughter, Rachel, was diagnosed with tonic-chlonic seizures when she was 5. At first friends and family, even Kelly and Rachel’s father, didn’t understand the young child’s strange behavior. She would become unresponsive and seem like she was stuck in a loop, often coming out of it dazed and confused.
Rachel has the catatonic-like seizures almost daily, and takes a variety of medications that are largely precautionary. Her particular form of epilepsy proves resistant to medicine.
Now 21, Rachel lives at home and Kelly spends most of her time caring for her daughter. She credits the Epilepsy Foundation with helping support her family through education and programs, including training sessions with school teachers.
Kelly said one of the most important things is the need to fight the stigma attached to epilepsy and for businesses to give people a chance as potential employees. Rachel is currently employed at On The Border, where the state is providing a trainer to help her and the staff work with and through her disability.
Information about the West Haven event is available at http://www.epilepsyct.com/sharon.php or call 860-346-1924. Registration for the walk, run and 20 mile bicycle rides is $25. The 50 mile ride is $50.