Learning to Live with Epilepsy

Robin Czarnota is sharing her daughter Zoe's eJourney with epilepsy
By
Robin Czarnota
Parent of a Child with Epilepsy
Monday, November 15, 2021

My name is Robin Czarnota and my husband Mark, and I have been the parents of a child with epilepsy for the last 15 years. I am a women's services specialty nurse by trade, but being a mother is my favorite job. Mark is a scientist at the University of Georgia. We have been blessed with two wonderful children.

Our son Zach is 20 years old and a student at the University of Georgia, and our daughter Zoe is a 15-year-old student at Pike County Middle School. Zoe has intractable epilepsy and started her journey with the diagnosis of infantile spasms at 5 1/2 half months old, which progressed to Lennox-Gastaut Syndrome.

Zoe first had a seizure when I was nursing her. The seizure looked nothing like seizures I had heard about, but somehow, I knew what it was. From that point on, the fight was ongoing and exhausting as we tried to find the best path of treatment for our sweet daughter. Our biggest challenge is balancing seizure control with medication, and we have yet to overcome this.

Zoe is non-verbal and still has seizures daily. Somehow, she makes the best of it though, and touches the heart of each person she meets.

The hardest part of it all is the public seizures that have happened in the lobby of the doctor's office or in the check-out line. Everyone always reaches for their phones to call 911 while we try to convince them that we just need to let the seizure pass and then carry on with our day. People don’t understand seizures, which is why creating awareness about them is so important.

Through our experience, we have realized the importance of advocating for Zoe and for ourselves. It is critical to have a healthcare provider that will listen and direct you to other doctors and specialists if needed. The best healthcare providers are those that hear your concerns and understand that you know the condition that you face the most.

Accepting help from other people can be difficult sometimes, but the struggle is every day, and we have learned to live with epilepsy, but also to allow ourselves to take a break when we can.

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Reviewed by: 
Sara Wyen

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
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