At 3 and a half moths old, Hailey’s mom fed her and put her down for a nap for the first time in her “big-girl bed.” She had been sleeping by her parents bed in a bassinet but that day was supposed to be a transition into a new phase of her life. It was. What followed was the beginning of a roller coaster ride that her family would rather not be on. The, then, 3-month-old had her first tonic clonic seizure, her first helicopter ride and her first hospital stay. She only stayed overnight because the doctors were sure this was a febrile seizure and one-time event. She was cleared to go home and live a normal life.
The seizures continued. The helicopter and ambulance rides have become too numerous to count. Hailey has Dravet Syndrome The diagnosis came after 2 and half years of uncertainty, numerous seizure medications and a special diet. While it was nice to have a name, it was little consolation. Dravet Syndrome comes with a laundry list of complications, of which, seizures are the icing on the cake.
At nearly 5 years old Hailey was put into an induced coma to stop her seizures. At that time she began 3 new medications – two of those were not FDA approved. She spent her 5th birthday in the hospital. And she recovered.
While she has fairly good seizure control right now, the medications are suppressing her immune system and she is often sick. Hailey recently had what was supposed to be a routine tonsillectomy and ended up in the PICU for several days. Her lung collapsed and her blood pressure bottomed out. The doctors simply don’t know why. It could be that she had an underlying infection. It could he her body’s inflammatory response to pain. It could be just Dravet. Hailey spent her 8th birthday in the hospital.
Cannabis is the next step for her. She is currently on the waiting list for Charlotte’s Web. Hailey’s family hopes to get her off the pharmaceuticals that are killing her. They hope to retire the g-tube that will be a forever reminder that she stopped eating. They hope that the world will get a chance to meet the beautiful, energetic, spunky little girl that has become the sunlight in their lives.