I am Kyelynn; I am 15 years old. I live with Dravet Syndrome. I have a new service dog named Trojan and I still have my retired service dog, London Rose. I have a twin sister and a brother! I spent the first 4 months of my life like every other happy baby. Then just before I was 5 months old, I had my first seizure while on vacation at the beach. Thankfully it wasn’t a very violent seizure, but it didn’t stop. I got medicine at the hospital. Then I was sent to a children’s hospital where they ran a lot of tests. 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 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. This gene controls how sodium channels operate in my brain.
I have had well over a dozen status seizures and hundreds of tiny myoclonic seizures. Status seizure means that it won’t stop without medical intervention.
I have a bunch of special people at school who help me learn and keep up with all the other kids. I attend a life skills class at school where I receive occupational therapy, physical therapy, and speech therapy. I also have a hearing specialist that works with me. I have gotten a lot stronger over the years but will work on balance, coordination, and strength. Speech therapy helps with people being able to understand what I say and with reading. My family and friends 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. Having Dravet Syndrome means I can have a seizure at any time. I went several years without needing a seizure to be rescued, but that is not typical for Dravet. Then I changed medications to find better quality of life with fewer side effects. When I did that, I had a 2 year period where I had seizures every few days. Most recently, I am having seizures every few days and sometime every few weeks. I don’t have the side effects and I have overall a much better quality of life, but I have more seizures.
I am a very happy teenager that gives lots of smiles, giggles, and hugs. I love to sing. Please help me and Team Kye raise awareness for epilepsy and funds to support research so I and others like me can live even better lives!