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 | | | I have been involved in many areas of the Epilepsy Foundation of Northern California for the past 20 years. I was born in Riverside California but have spent my life living in Northern California. I have two sons Sean Jr. (21 yrs.) and Dylan (18 yrs.)
In November 1989, I was watching my son, Sean, playing in his walker when his head twitched and his body started to shake uncontrollably. Twenty years later, after thousands of a variety of epileptic seizures, an incredible array of drugs, dozens of blood draws, fourteen ICU stays and many more hospitalizations, a mountain of EEG's, MRI's, CAT scans and PET scans, six neurologists, the Ketogenic Diet, implantation of the Vagus Nerve Simulator, and countless prayers, Sean's seizures still continue, his development delayed, and he has a prognosis of continued seizures and progressive retardation.
I think I was asleep for the first five years. Or just thought he might outgrow his seizures, which is what I was told.
One day I turned on the television, was flipping through the channels and stopped on one that was talking about a Walk for Epilepsy. It was like a ton of bricks hit me in the face, and I thought to myself, WOW, you mean someone else has seizures?! Because of this I found an epilepsy support group and was able to network with other people and parents.
I went to that Walk and many more to follow, developing my own team of walkers with my co-workers and family members. This helped spread the word with people outside my world of epilepsy.
I also took over a support group in Stockton for people with epilepsy and parents of children with epilepsy and did that for several years. I felt very passionate about taking on this task because this support group was really where it began for me. After taking on this group things started to snowball for me, not only was I getting the most updated information on epilepsy but also I now was taking a VERY active role in my child's treatment. My son was the first person at Stanford to be on the Ketogentic Diet and the first person to be implanted with the Vagus Nerve Stimulator. I soon became involved with all the programs the Epilepsy Foundation of Northern California had to offer.
I was then asked to serve as a member of the Foundation's Board of Directors. During that time I got the opportunity to be an Epilepsy Advocate for the Public Policy Institute and travel to Washington, D.C. to educate members of Congress about epilepsy, the importance of epilepsy research funding and the needs of people with epilepsy.
I know what it feels like to have a child with epilepsy and to deal with that on a daily basis. I know what it feels like to sit in an intensive care unit for days at a time, and more than once. I know what it feels like to watch your child pricked with a needle over and over for blood draws and I.V.'s. I know what it feels like to give your child medicine even when you know that there might be terrible side effects in the hopes that it might make a difference. I know what it feels like to watch your child go from bright and bubbly to mentally challenged and severely delayed.
I took the position of Executive Director about five years ago. I am not just the Executive Director, but also a Mom of an adult with epilepsy. I am very grateful to use the knowledge that I have gained both personally and professionally. I believe there is HOPE with research, advocacy, and education. We can make a difference in the lives of people affected by epilepsy! |
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| Neva Hirschkorn - Pleasanton, CA |
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