by Nicky Cappadonia
My name is Nicky Cappadonia and I am 16 years old. And I have seizures. I have had them for 7 years. We live in Brockport, NY. We have 5 in our family. We have: JJ, me, mom, dad, and Samson. Samson is our dog.
When I had my first seizure I was six months old. I had a brain infection called men-in-go-en-ceph-a-lit-is. And I was sick for a long time. I took medicine until I was three years old. I didn’t have any more seizures until I was in Fourth Grade. At lunch my friends told me to “stop staring, Nicky.” Then my teacher told me to “stop staring, Nicky.” The teacher called my mom and my mom said, “stop staring, Nicky.” Nobody knew that I was having seizures.
One night we went to Pizza Hut and when we were waiting for our pizza, I started staring again. My mom and dad looked at each other and said, “What was THAT?” A few weeks later it happened again. I was standing at the top of the basement stairs and my dad caught me before I fell. My mom said, “I am calling the doctor because I don’t know what this is, and I remember once that the doctor said something about if he starts staring, it might be that he is having seizures.” My mom and dad got shocked and I did too. It was scary.
I went to school after going to the doctors and said to my teacher and my friends that I have bad news. The thing is, I’m not staring at you because it was my fault. I was staring because I am having seizures. That was the problem that they didn’t know.
Then I started having seizures every day. Sometimes I had one or three or six or eight. They took me to Strong Children’s Hospital in Rochester, NY for a long test. I had so many seizures the doctors couldn’t count them, and they said that I have epilepsy and they gave me more medicine.
When I am having seizures I feel upset. I don’t get what people are saying and sometimes I don’t know their names when I have a seizure. When I have a seizure sometimes my head goes down, sometimes I stare, sometimes I shake, sometimes my hands go up and sometimes I fall. God helps me with my seizures all the time and God loves me very much and takes care of me. I believe that seizures are not my portion in life and my favorite Bible verses are “by Christ Stripes, I am healed” and, “God has a plan for me and it is a good plan to give me a future and a hope.”
So when I have a seizure my mom and dad calm me down. They count how long the seizure is. And they try to find out what kind of seizure it is.
And if it was a long seizure they might call 911 and there would be an ambulance and it might take me to the hospital. And then the doctor would ask what kind of seizure was it and my mom and dad would say it was a terrible seizure!
When I was 13, Michael Radell (Community Educator for the Epilepsy Foundation and CAMP EAGR Director) came to our house to show us a video about Camp EAGR. EAGR stands for “Epilepsy Association of Greater Rochester.” The activities they did there were swimming, canoeing, horseback riding, arts and crafts, some organized sports, campfires and cook outs, and hiking. I was able to go to the camp! My favorite thing about camp was swimming, archery and eating pizza!
And then one day last January Michael Radell called and said, “Hey Heather and Nicky I have an idea, we should go to Washington, DC for the Kids Speak Up program” and it was a great idea. We went on April 21 through the 23, 2013. And there were 37 kids from around the country and the Epilepsy Foundation of America taught us how to tell our stories to Congress. The night before we went to Capitol Hill I had a big long seizure in front of the White House while me and Michael Radell were sightseeing. The police called the ambulance and Michael Radell called my mom. There were so many lights and sirens and crowds of people that the Secret Service put extra sharpshooters up top of the roof of the White House. And then they took me to the hospital. When I was in the ambulance everything looked like it was white and there were no sounds. They did some tests but I was fine.
The next morning I had important things to do. I spoke up. I spoke up to people and told my story to Senator Charles Schumer’s staff and Senator Kirsten Gillibrand’s staff. Then we met Congresswoman Louise Slaughter. She gave me a big hug.
The place I would like to work one day is Pizza Hut. I am not going to let that epilepsy get in the way.
So the thing that makes my seizures go away is medicine. We pray at home and we pray at church every Sunday. We go up to the healing team when church is done and we all pray. It is also good when I get a good night’s sleep so that God will be able to get my seizures out. And when my seizures are out we can tell people that they are out. And people are going to be happy that they are out. And Michael Radell will be happy too.
