It was late in the afternoon on February 21, 2002 when the phone rang in my office. I picked up the receiver and my daughter, Lauren, was screaming, 'Jen just called and they can’t get Christopher to breathe.' I had no idea who she was talking about. The moment our lives changed forever, suspended in time for that one brief second. And then I knew.

 

Christopher had been studying in bed and filling out an application for a summer internship. He was alone. His girlfiend found him. It was too late. He was dead. Autopsy results were consistent with SUDEP. We were stunned and confused. What was SUDEP? How could this have happened? 

 

Christopher was 21 years old, a senior in college, facing a future of exciting challenges and endless possibilities. He approached life with passion and joy. He was competitive in the classroom. He loved playing baseball.

 

Christopher loved his family and friends. He had an opinion on everything, from politics to food to music to sports. Like others his age, he soaked up life and wanted it all.

 

And, Christopher had epilepsy. Diagnosed just before his senior year in high school, Christopher struggled with the side effects of his medication, the frustration of not being able to drive for extended periods, and the fear and uncertainty of when that next seizure would come. 

 

Initially, Christopher’s seizures were well controlled with medication but then he began to experience breakthroughs, and other mediations were added. Finally, we believed we had the right combination, that he was seizure-free. However, after his death we learned that the seizures had never stopped. They were coming more regularly, with greater intensity. The medication was not working. He did not share this information with his doctor, or us.

 

Why? I can only imagine that he just wanted to live a normal life; that he felt he could figure it all out. He certainly never thought he could die from a seizure.

 

Would it have made a difference if Christopher knew about SUDEP? Would he have told us that his seizures were continuing? I believe he would have, but I’ll never know. 

 

There is nothing worse than losing a child, but to feel that Christopher did not have all the information he needed to make informed decisions makes it especially cruel. He didn’t have a level playing field. Knowing this information may have saved his life … what do you do with that?

 

Jeanne Donalty

Global Conversation 2011