Kenidee’s Dravet syndrome story began when she was just five 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.
State of Science
In March 2022, an international research team co-led by Cleveland Clinic’s Lerner Research Institute developed and validated a prediction model to aid in the early diagnosis of Dravet syndrome.
In July 2022, the U.S. Food and Drug Administration (FDA) expanded the authorization of stiripentol (DIACOMIT) for use in Dravet syndrome patients aged 6 months and older who are also taking clobazam, a significant update from the previous approval for patients aged 2 years and older. This expansion improves early access to the only treatment specifically approved for seizures in Dravet syndrome for younger children.
Kenidee was six 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.
Before DSF: Kenidee’s first seizure turned a holiday into a medical crisis, and the road to a Dravet diagnosis was filled with uncertainty and fear.
With DSF: Armed with knowledge and a strong support system, her family has become fierce advocates—spreading awareness, educating others, and ensuring Kenidee gets the best care possible.
Hope for the Future: That awareness leads to quicker answers, better treatments, and a brighter future for kids like Kenidee.
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 three 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.
