Kenidee’s Dravet story began when she was just 5 months old. What began as a family Christmas celebration turned into a hospital trip which led to being admitted into our closest children’s hospital. During our family Christmas party, Kenidee went into a seizure that lasted over an hour. Thankfully several members of our family have a medical background and knew what was happening immediately, which led to a faster response time. After a month of continuous seizures, medications not working, countless calls to 911 and hospital visits, we learned of Dravet syndrome.

Kenidee was 6 months old, Valentine’s Day of 2022, Kenidees neurologist at the time walked into the exam room with a piece of paper. The doctor could barely make eye contact with us when he said “I am so sorry. Kenidee has a genetic mutation. This mutation and the severity of her seizures is called Dravet syndrome. This will not be easy for her or you. Your life has now completely changed and it will be very difficult”. He was right, our life did completely change and it is very difficult.

But, we promised Kenidee that we would make life as enjoyable and bright as possible for her. Since this day, we have made it our mission to spread awareness, educate others, educate ourselves, advocate and do everything possible for her health. Kenidee is now 3 and no it’s still not easy, but our girl is so full of life and strength. Her strength is what keeps us going. Our prayer, is that she continues to fight. We will fight for her and with her every day