Every mother will say their child is special. But my sweet Josie truly is. She is the definition of a warrior.
My name is Zoe Rabun and I am the mother to our beautiful daughter, Josie Rabun (3). We first noticed unusual behavior with Josie at the age of 9 months. She would wake up in her sleep and have these “head drop attacks’ ‘ back to back to back and crying after each one drop. After about 3-5 consecutive nights of this behavior I knew in my heart something wasn’t right. At this time, we were also battling recurrent ear infections and getting her up to date with her immunizations since we got behind with her having ear infections. I think it was the 4th or 5th night of her waking up in the middle of the night and I had enough and started Googling her symptoms which led me to West Syndrome/Infantile spasms. The next morning we were admitted to our nearby CHOG-Augusta where she confirmed her diagnosis of Infantile Spasms.
We were connected with a neurologist in town and had monthly appointments to hopefully get her seizures under control. Unfortunately, her seizures worsened over the next 9 months despite our trial of multiple anti-seizure medications and ketogenic dietary therapy. Each treatment initially seemed to work; then quickly would lose its efficacy. Our neurologist then decided to do an updated head CT which led us to a new diagnosis of Lennox-Gastaut Syndrome.
In a nutshell, Lennox-Gastaut Syndrome is a severe, refractory and complex epilepsy that encompasses many different, extremely frequent, seizure types along with learning disabilities, psychological co-morbidities and sensory processing issues.
We started an Instagram page for Josie to connect with other families, update her progress, and bring awareness to our family and friends to help raise awareness of the devastating consequences of refractory epilepsies.
We were able to participate in the 6th annual Walk ‘n’ Wheel and raise over $2,000 for LGS research.
Every mother will say their child is special. But my sweet Josie truly is. She is the definition of a warrior.
We thank you for taking the time to read our post and hope you share her story. We are happy to call the LGS community our family.
-Zoe Rabun
