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Founder's MessageMy husband and I watched helplessly as our 2 1⁄2 year old son went from being a happy, funny, active and developing little boy to a child that appeared lifeless. After all we had seen we couldn’t turn our backs on it. Emmett was having hundreds of seizures a day, and the reason was unknown. How could this be? Would he have brain damage; what were the side effects from all of the anti-seizure drugs; would this ever end? My husband and I had so many questions and uncertainties and were left to our own devices to find the answers. We felt so isolated. I could not believe how little I knew about epilepsy and now I can’t learn enough. I also found it very difficult to find information, whether from doctors, the medical community, or on-line. I am now pledging to change the face of epilepsy. As a result of the frustrations that I faced daily and the lack of information available, I have created a place–which I hope will become a community–where you can learn about epilepsy, share stories and ideas, and offer support to others facing this debilitating, often chaotic, disorder. Our family is now comfortable, so to speak, with attending to Emmett when he has seizures, and feel he will be safe here at home and at his school. We are vigilant about whom we entrust his care now while he is young, but he will not always be with us as he continues to “grow-up” and move-on. Eventually, as with all children, he will leave the nest and face the world on his own. That is a daunting event for any parent, but for the parent of a child with epilepsy, it is especially frightening. Emmett will have to rely on the public to help him if he has a seizure. Because of this, it is my mission to educate the public about first aid for seizures, so that I can feel confident that someone will be there to help keep him safe during a seizure when I can’t. Epilepsy is now my life’s work and I will do everything in my power, with the help of my supporters, to do away with the myths and stigma the public believes, so that those that suffer from epilepsy will be treated with the compassion they deserve. I hope that the American Epilepsy Outreach Foundation can be an oasis for you during a very difficult time in your life, a place where you can go for resources, answers, solace and support, whether you are a person with epilepsy or care for a person with epilepsy. I wish you peace, Erin Leyden
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3 percent of the population will develop epilepsy by age 75 Dr. Roy Sucholeiki, MD |