Abbee’s Story

Abbee had her first seizures 15 years ago at the age of three. Her mother, Bonnie, took her to their pediatrician, who sent them from their hometown in Franklin to Omaha’s Children’s Hospital. Abbee’s condition worsened there and she was sent to Children’s Hospital in Aurora, Colo., where she was diagnosed with Lennox-Gastaut Syndrome (LGS), a rare form of epilepsy that begins in early childhood. By this point, Abbee was experiencing around 20 to 60—and occasionally up to 100—seizures a day. 

Doctors tried numerous medications, diets, and therapies to decrease Abbee’s seizures, with no success. As a progressive condition, LGS delayed Abbee’s development and led to intellectual disability. In July 2021, Abbee underwent a corpus callosotomy, a brain-splitting surgical procedure that reduces atonic (drop) seizures in people with generalized epilepsy. Though surgery has not eliminated her seizures, they have lessened in frequency. 

Her family is dedicated to supporting Abbee, now 18, in living the highest quality life possible. She goes to school for two hours, one to two days each week. Abbee is always included in family activities, including sports and church, along with her three brothers, who are now 15, 24, and 28. Along the way, Bonnie realized she would need to be Abbee’s voice and has worked hard to advocate for Abbee and educate others about epilepsy. 

A pivotal moment came when Abbee attended a second-grade roundup and had a drop seizure on the playground. As Bonnie cradled her head to protect Abbee, she heard a classmate’s mother tell her child, “Don’t get close to her—you could catch it!” The implication that epilepsy is a contagious condition that her child might spread made Bonnie sad and angry. While she described it as a horrific experience, she says it inspired her passion for educating others about epilepsy and supporting parents going through similar experiences. She has also set up scholarships at McCook Community College for those pursuing a degree in special education. 

Abbee’s family doesn’t know what caused her condition, only that LGS is extraordinarily rare, occurring in about one to four percent of all cases of childhood epilepsy. Bonnie feels that advocating and raising funds for the Epilepsy Foundation will add to research efforts and provide support to other families on similar journeys. She asks for your help today.