When Rory was 6 months old she had her first seizure. While we were definitely freaked, we truly thought nothing of it. We chalked it up to a febrile seizure and moved along. A month later she had another seizure, and then the day after discharge another, and a few days after that another. So we started on the journey of both finding meds that would get her seizures under control, and of finding out the cause. During this time Rory developed 6 different types of seizures, all seemingly triggered by either overheating, warm water, or by over exertion. As Rory continued to seize and we continued to experience both ER visits and hospitalizations, she finally had a seizure captured on EEG. The epileptologist said "her interictal discharges resemble a channelopathy" and I went on a hunt for information on channelopathies that cause seizures. ...and I didn't like ANY of what I was reading. One morning I was perusing the neurology page for the office she goes to and Dravet popped out at me. I read the info on the website and was convinced that Rory had Dravet. I called the office and went through every single seizure and what was occurring that day and why I felt like it was Dravet to this poor sweet nurse who then relayed it to Rory's neurologist. We made med changes that day. A few weeks later her genetics resulted and confirmed what we were afraid of, Rory has a pathogenic SCN1A gene variation indicative for Dravet. Since her diagnosis she has had more hospitalizations, intubations, and EMS house calls than any child should have to endure. But she continues to smile. I am fundraising for her and every other sweet Dravet warrior, so that research can continue to find a cure for Dravet. Because for me and so many other parents of Dravet warriors, every big seizure feels like a punch to the gut as you worry if this is going to be the one that takes your baby child away.