Project Description

Kyelynn’s Story

Hi- My name is Kyelynn. I am 4 years old and I am a twin! My sister’s name is Taylor and my little brother is Caleb. I spent the first 4 months of my life like every other happy, healthy baby. Then just before I was 5 months old I had my first seizure while on vacation at the beach. It wasn’t a very violent seizure. Actually, it took Mommy and Daddy a little while to figure out that my leg twitch was a seizure. That first seizure didn’t stop until I got medicine at the hospital. I was sent to a children’s hospital where they ran a lot of tests and when I finally got to leave they told my mommy and daddy that it was unlikely to happen again, but to follow up with a neurologist back home. Before I could get an appointment I had another big seizure at home in my bed. I took my first helicopter ride that night to the hospital. I was pretty sick and spent a night in the ICU. This time I had a fever so the doctors told my parents I probably had febrile seizures and sent me home with “rescue” medicine in case I had another seizure, but they still thought I would grow out of it. Sure enough I was back in the hospitals a few weeks later after another seizure. I was started on daily seizure medications but kept having seizures. Eventually the doctor tested me for a genetic epilepsy called Dravet Syndrome. They found out I have a de novo mutation on my SCN1A gene which means my Mommy and Daddy have normal SCN1A genes, but I have a 1st generation change. I have had well over a dozen status seizures and hundreds of tiny myoclonic seizures. Mommy and Daddy are very proud of me and how well I am doing. Unless you have seen me have a seizure, or watch me take my medicine, you wouldn’t know I have epilepsy. I am a pretty normal kid with lots of smiles and I love to sing. We’ve started a website for you to be able to follow my story and to make others seizure aware.