1 in 26: Cole's Story

Cook Children’s patients, families and staff came together on Wednesday, Nov. 1, to kick off Epilepsy Awareness Month on the lawn in front of the medical center.

But it was one of the people who could not be at the event that was the cause for celebration. Kelley Pettit spoke to the group in attendance and let them know that her son Cole would not be attending for all the right reasons.

“I wish Cole was here to tell you thank you from the bottom of his heart, but the reason he’s not here is because he is a sophomore at Texas Tech University,” Kelley said. “I wish you could know how amazing that truly is because there was a time that graduating from high school was not a certainty. There was a time where driving a car was not going to happen. A time where going to college was out of our reach.”

There was a time when the Pettit family wasn’t given much hope for their son. Cole, who is 19 now, had his first seizure at the age of 5. For 10 years, Kelley said her son struggled with seizures and that meant he struggled in school. He was constantly fatigued. Epilepsy hurt his ability to interact socially with friends. His self-esteem suffered.

Cole went through nine different medications that all failed and three different doctors, “who all told us the best we could do was just keep changing medications” Kelley said. Cole’s epilepsy became more debilitating as he reached 12 to 15 seizures a day.

Kelley says the turning point happened when she went to an event sponsored by the Epilepsy Foundation. The speaker that day was Angel Hernandez, M.D., who was a neurologist and epileptologist at Cook Children’s at the time.

She spoke to Dr. Hernandez about her son’s condition and he gave her hope that maybe something could be done for Cole. Kelley, who lives in Dallas, drove to Fort Worth for Cole to receive a full battery of tests. The test results showed that Cole could receive surgery.

David Donahue, M.D., a neurosurgeon at Cook Children’s, resected the part of Cole’s brain causing the epilepsy. That was four-and-a-half years ago and Cole hasn’t had a seizure since the surgery.

“I can’t thank you enough for the good work you are doing here. It’s absolutely a miracle,” Kelley said. “We’re very, very blessed. We appreciate you so much. Keep it up. Keep changing lives. Thank you for giving me my kid back. His life is so different now than where we were headed. We really didn’t think we would have this opportunity. From the bottom of my heart, from me, my family and my son, thank you.”

1 in 26

Cole is 1 in 26 people in the world who will develop epilepsy at some point in their lifetime. That’s greater than the number of people with autism, Parkinson’s, multiple sclerosis and cerebral palsy combined. Sixty-five million people in the world live with epilepsy.

A third of those people have uncontrolled seizures and for 6 out of 10 people with epilepsy, the cause is unknown.

“Despite the staggering numbers, epilepsy remains a diagnosis few people talk about," said Scott Perry, M.D., medical director of Neurology and co-director of the Jane and John Justin Neurosciences Center. “Many misunderstand the disorder which results in social isolation, stigma and fear. Furthermore, the money dedicated to research in epilepsy pales in comparison to funds spent for disorders which are much less common. It is our duty as health care providers in Neuroscience, to help eliminate epilepsy and we do this by increasing awareness.”

Cook Children’s community has come together to support epilepsy awareness throughout November. Starting Nov. 1, the medical center will be lit in purple to signify the dedication to raising awareness. Employees will be wearing purple or one of two epilepsy t-shirts they designed to spread the word of how common of a disorder epilepsy is.

Weekly educational lectures are planned for parents, family members and patients with epilepsy covering topics of interest and demonstration for the public on seizure safety and first-aid.