My Story

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Blog_banner_v1Hi- My name is Kyelynn. I am 6 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 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 until I got medicine at the hospital. 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 special needs life skills class and have occupational therapy, physical therapy, and speech therapy, and a hearing specialist that work with me in my life skills classroom. I still have a lot of difficulty with balance, coordination, strength, and people being able to understand what I say.  Mommy and Daddy are very proud of me and how well I am doing. I actually have not had a large seizure since March of 2012! 

Unless you have seen me have a seizure, or watch me take my medicine, you wouldn’t know I have epilepsy. I am a very happy 6 year old with lots of smiles and 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!