Trussville teen with epilepsy shares story in new book to end fear and misunderstanding

Late one evening, Trussville resident and father Mike Rowe heard a sound upstairs that startled him: something hit the floor upstairs in his younger daughter’s bedroom. He rushed upstairs and discovered his daughter, Caroline, lying on the floor unconscious.

In a panic, he started to shout to wake her and placed his finger in her mouth, which she then bit. After several minutes, Caroline’s sister Kaleigh woke up to the commotion and dialed 911.

Caroline’s mother, Julie, accompanied her in the ambulance to the hospital, while her father and sister followed close behind in the family car.

“We drove to Children’s Hospital, where they ran several tests,” Julie Rowe said. “Everything looked fine. They told me that she had a seizure. They said that the first seizure is a freebie and to follow up with her pediatrician.”

The family took Caroline home where, surprisingly, she slept over eight hours.

“When Caroline woke up, she could not remember anything, nor did she remember activities from the previous day,” Julie said. “She didn’t remember her school Christmas party or receiving a book her teacher had given her the day before for Christmas. Caroline had already completed the book, but had no recollection of the book at all.”

After Caroline followed up with her pediatrician, it was recommended she see a neurologist and receive an electroencephalogram (EEG) to look at her brain activity. The Rowes were told their 9-year-old girl had epilepsy.

Roughly 3 million children and adults in the United States have epilepsy, which is “a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness or convulsions, associated with abnormal electrical activity in the brain.”

That frightening evening, Caroline experienced a tonic-clonic seizure, formerly known as “grand mal” seizures, which causes loss of consciousness and a tonic phase — stiffening muscles — followed by the clonic phase — where the muscles jerk rhythmically. These seizures can also cause difficulty breathing.

“Caroline has had five tonic-clonic seizures and hundreds of absence seizures, which involve staring spells,” her mother said. “In addition, she is photosensitive to bright or flashing lights, which can cause a seizure.”

Over the past eight years, Caroline, now a senior at Hewitt-Trussville High School, has been on medication to control her seizures. She wrote a book to end the fear and misunderstanding that surrounds her disease.

“I wanted to write this book because there aren’t many books about girls with epilepsy,” Caroline said. “All of the books I have read have been mostly about boys with epilepsy. And actually I learned that it is more likely for a girl to have epilepsy than a boy.

“This is a book I wish I could have had when I was 9 years old,” she added. “At the time of my diagnosis, my family did not know anything about epilepsy. So, this book is basically for a 9-year-old Caroline.”

Caroline’s fictional children’s book, “My Friend Had a Seizure,” is about two best friends, Maggie and Marley. While playing together in Marley’s room, Maggie falls to the floor and begins shaking uncontrollably. Marley is frightened and, not knowing how to help her friend, calls her mother for help. She then called 911 and Maggie’s mother.

“The book explains the different types of seizures, triggers, how to be seizure smart and what to do if someone has a seizure,” she said.

She said being seizure smart is knowing what to do in the event someone has a seizure.

“The important part is to not panic and do not put anything in their mouth,” Caroline said. “Instead, alert an adult, cushion their head, turn them on their side, loosen clothing and wait for the seizure to pass.

“After learning how to help her friend understand seizures and how to help, Maggie asks her school principal if the teachers could be seizure smart,” she said, a mission she is advocating locally, statewide and nationally. “I hope to get a law passed in Alabama to require all school personnel to know what to do if someone has a seizure,” she added. “I would like to start at the local level in Trussville.

“My mission is personal for me since I have epilepsy. There is a possibility of someone having a seizure at school, so if teachers are not trained, they may not know what to do. Even though some people may know what to do, others still may panic if it did occur and not respond correctly,” she said.

In Alabama, there are nearly 9,200 students up to age 17 who are afflicted with seizures. Caroline’s bill advocates to make schools a safer environment for these students by providing teachers and school employees with life-saving training.

Caroline Rowe was nominated by the Epilepsy Foundation of Alabama to attend an event in Washington, D.C., this past spring. She enjoyed meeting others with epilepsy and joining them to advocate for funding for research and other programs.

“I was able to sit down with Congressman Gary Palmer, Sen. Doug Jones and Sen. Richard Shelby during my visit, share my story, talk about my book and discuss the Epilepsy Foundation’s initiatives,” Caroline said.

Caroline will participate in the Epilepsy Walk on Nov. 2 at Railroad Park, including fundraising with her team and greeting walkers.

To get a copy of Caroline Rowe’s book, email Julie Rowe at rowej@charter.net. To find out more about epilepsy and find out how to be seizure smart, visit https://www.epilepsy.com/.