patient story

“Make lemonade out of lemons,” is a motto that 10-year-old Jordynn Farley, lives by. When Jordynn was 6 years old, her mom, Carrie noticed that she was having seizures in her sleep. As she watched her daughter vomit and shake, Carrie knew she needed to get Jordynn to Dayton Children’s Hospital.

Without hesitation, Carrie placed her daughter in the car and drove straight to the emergency department. Upon arrival, Carrie and Jordynn were greeted by the emergency team who immediately took Jordynn in to be evaluated. After hours of observation and no seizure activity, Jordynn was sent home.

A few weeks later, on Christmas eve, Jordynn was sleeping when another episode occurred. This time her mouth twisted as if she had Bell’s palsy and her arm was hoisted in the air. Carrie tried to wake Jordynn, but her arm would not relax. This time Carrie decided to call 911. The squad arrived within minutes, and transported Jordynn to Dayton Children’s where she was admitted.

No child wants to be in the hospital on Christmas, and Jordynn was no different. Even a visit from Santa and a special Build-a-Bear didn’t cheer her up, she just wanted to be home with her family for the holiday. Her Christmas wish was granted when Jordynn’s care team decided to send her home on Christmas day with monitors on her head to track seizure activity.

After the Christmas holiday, Jordynn followed-up with Dr. Ajay Goenka, pediatric neurologist and epilepsy specialist at Dayton Children’s. Dr. Goenka ordered more testing and performed a series of evaluations during the appointment.

“I would recommend Dr. Goenka to any parent who has a child going through epilepsy,” said Carrie. “He always spoke words of affirmation to Jordynn and kept her spirits up.

Jordynn was diagnosed with benign Rolandic epilepsy at age 7. Benign Rolandic epilepsy is the most common form of childhood epilepsy, and most children outgrow the condition by puberty. Because of the frequency of Jordynn’s seizures, Dr. Goenka started her on medication. To be taken off the seizure medication, Jordynn would have to be seizure free for two years.

Fast forward two years and Jordynn is not letting her diagnosis of epilepsy slow her down. She models and performs in plays, proving that her diagnosis doesn’t define her. Since starting the medication, Jordynn has only had one scare but no actual seizures. This meant one thing to Jordynn. No more medication!

The whole family was thrilled that Jordynn made it to the two-year mark without any seizures. She was at her Nana’s house when she

found out she would no longer need her medication and when Carrie picked Jordynn up that evening she was greeted with a surprise.

Jordynn took it upon herself to write a story about her journey with epilepsy.

At first, the Farley’s had no intention of doing anything more with the story, but Jordynn wanted to collaborate with her Nana to make illustrations. For Christmas the same year, Carrie bought Jordynn an illustrator kit so she and her Nana could work on turning her story into a book.

Jordynn became a published author at the age of 9 and for her tenth birthday she had a book release party for “Unstoppable Me”. Not only did Jordynn write a book to inspire and encourage others, but she wanted to give back to those who have helped her throughout her own journey. Some of the proceeds from “Unstoppable Me” benefit Dayton Children’s Hospital and Epilepsy Kids Crew.

Since stopping medication, Jordynn has only had one scare. In the Spring, Jordynn will follow-up with her nurse practitioner, Tina Krysiak, APRN, CPNP, to determine if her diagnosis will remain the same or if it will be changed.

No matter the outcome of her appointment in the spring, Jordynn plans to continue spreading encouragement and inspiration to others.

“You can do whatever you want to do, don’t let any disability stop you from reaching your dreams” – Jordynn Farley, age 10