Q: How did Emmett’s diagnosis affect your family?
We lived day-by-day. It was hard to plan anything because Emmett’s well-being determined the kind of day we would have. It affected everyone. Emmett has an older brother who saw everything; it’s changed him in a way that makes him more aware of people’s needs. He’s definitely a more sensitive child and more loving. He said he wants to be an ambulance driver when he grows up so he can take care of Emmett.
Q: What is the mission of the American Epilepsy Outreach Foundation?
We want epilepsy to be a household name, so when a person mentions they have it other people won’t be afraid and will know how to react if they should witness a seizure. Since we started our organization, even a few of our volunteers have witnessed strangers having seizures in public and they knew what to do and what to tell the crowd that formed around that person. If you were the one having a seizure, you would want someone around you to know what to do.
Q: What are some of the campaigns the organization is working on?
Last year we launched the F.A.C.E.S. (Friends Accepting Classmates with Epilepsy and Seizures) Educational program. It’s a free program geared towards 5th graders and older students, to provide epilepsy awareness and seizure first aid information. We are currently working on a F.A.C.E.S. to-go program that can be sent to schools and parents around the country, so that others can spread epilepsy awareness.
Q: What kind of support does your organization offer to parents and families?
We offer individual online support to anyone who sends us an email. When Emmett was suffering through hundreds of seizures a day, we felt alone. Our lives stopped. We understand the heartache a day with seizures can cause. Sometimes the lifestyle that epilepsy provides cannot be described. So just letting people know that we understand and are available to talk or email can make all the difference. It was a lonely journey for our family and we don't want anyone to feel that loneliness.
Q: What has surprised you since you started the organization?
When we hear numbers like 50 million people worldwide suffer from epilepsy we can't even believe it. We are tackling epilepsy awareness one family at a time. If Emmett's life made this much of an impact on our family and friends, then we know that our efforts will make a difference throughout the world.