Thriving with Epilepsy: Steve Stoterau

This month, we would like to introduce you to Steve Stoterau. Steve has given generously to EFMN to ensure that kids with epilepsy experience the fun and friendships of a week at Camp Oz. Although Camp Oz was not available when Steve was diagnosed with epilepsy as a child, he now visits every year to experience the contagious joy of the campers.

Steve's Journey with Epilepsy

1.Tell us about your journey with epilepsy.
When I was two years old, I fell down my basement stairs and hit my head on the basement wall. Eight years later, when I was in sixth grade, my seizures began, and when I turned 11, I was officially diagnosed with epilepsy. Growing up, I never let my epilepsy slow me down or hold me back. I had a difficult childhood but I was still able to make the best of my epilepsy and participated in activities with my friends. In 2009 I “returned” to the Epilepsy Foundation of Minnesota and got the support that had been missing during my childhood years. Today, I still do not worry about my epilepsy because I have many happy things to do with my life and refuse to ever let negative things bother me.

2.How did you initially get involved with EFMN?
I joined before they even called it a Foundation. When I initially became involved in 1979, EFMN was known as “The Epilepsy League.” I joined to participate with friends of mine at fundraising walks that were held that summer.

3.What events/programs are you involved with at EFMN?
Along with participating in the walks during my childhood years, in 2009 I went to the State Capitol to meet with my senator and representative through EFMN’s Advocacy program. Today, I am an active volunteer, strong advocate, and passionate donor for the Foundation – EFMN and its mission are the single most important things in my life right now.

4.Why do you choose to support Camp Oz?
I love being able to see kids at camp do things that they will never forget for the rest of their lives! Year after year, they have the chance to look forward to seeing the friends they’ve made at camp. These are the kinds of memories that are put into a person’s “permanent memory” and will always remind them of the great times that they had at Camp Oz.

5.What does Camp Oz mean to me?
With this question I had to think back to the time that I would have been eligible to attend Camp Oz. It would have put a great amount of joy into my life at a time when I was a huge introvert. I never saw the positive things that were in front of me, but if I would have had the ability to attend Camp Oz, I would have seen a much more positive life ahead of me. Getting joy into a person's life at a young age can be very life-changing for that person. This is why I am such a strong supporter and advocate for Camp Oz!

6.What is your favorite experience/part of Camp Oz?
My answer to this would have to be seeing that there are many other kids who are in the same position as you and have made it through their struggles! I have seen kids who are very scared the first time they come to Camp Oz and later become totally different people by the last day of camp. These same kids would do anything to stay with their friends because they have had such a great time and don't want that joy or happiness to stop!

7.What words of wisdom/advice would you like to give to others living with seizures?
The first thing that many people have to do when they are first diagnosed with epilepsy is to accept the fact that even though their epilepsy may be a part of their life for a very long time, it shouldn’t be anything to be nervous or ashamed about.

As for parents with children with epilepsy, don't ever show disappointment in your child or treat them differently from their siblings. Showing one ounce of disappointment can completely destroy a child's confidence in themselves and make their life very difficult.

Having epilepsy makes an individual very special. They will have the chance to conquer many things in their lives that a “normal” person might never be able to do.

Help kids chase their dreams – donate to camp today! 

With the help of donors like Steve, EFMN is expanding camp so all kids with epilepsy have the opportunity to attend camp. Learn more about our camp programs, or donate today!