Epilepsy Changed Everything

Jennifer is sharing her family's epilepsy story after losing her daughter Stephanie with the hope that other people in a similar situation don't feel so alone
By
Jennifer Kuells
Parent of a Child with Epilepsy
Friday, December 17, 2021

My daughter, Stephanie Ann Kuells, was diagnosed with epilepsy at the age of 14 when she was a freshman in high school. She experienced her first seizure at volleyball practice, which started the lengthy process of many tests to find a diagnosis.

Her coach called me after practice was over and told me what happened. When he asked Stephanie if this had ever happened before, and she replied yes. I do not know why she answered that way, except she was confused, embarrassed, and wanted to not have any more attention placed on her. If her coach had looked at her school records, he would have seen there was nothing about her having seizures in her history.

Eventually, Stephanie was diagnosed with epilepsy. I felt unprepared, shocked, and sad. I knew it would change everything for her, and I did not know how to help her with that. I did know we would support her and look for answers as much as possible.

Finding the right medication was a challenge. She would respond well to treatment for about a year, then start having breakthrough seizures. She would switch and start over. This went on throughout her life. Since her seizures were uncontrolled, she did not drive and was always bothered that she had to rely on her friends and family to get to normal day-to-day activities.

Stephanie died on February 20, 2013. She suffered a seizure while taking a shower when getting ready for work. I performed CPR and while the paramedics were able to get her heart beating, doctors were not able to do more. They were convinced epilepsy was the underlying cause.

After 30 hours, Stephanie was brain dead and there was no hope of recovery. We made the agonizing decision to disconnect life support.

Stephanie was a beautiful, kind-hearted woman whom we miss dearly every day. If you are in the same situation that we are, talk to other people and share your story. Sometimes people want to help, but they do not know to find a community to be a part of for support.

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Reviewed by: 
Sara Wyen

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