My name is Haley and I am 14 years old, but if you ask me how old I am I will answer that, “I am going to be 10”. I love The Wiggles, Barney, a firefighter-friend, named Jay, and my Daddy. My mom says I am “blissfully ignorant of my condition, but full of LOVE.” I have had uncontrolled seizures since I was 5-months old and have been on daily pharmaceuticals since I was two years old. My first neurologist was Virginia’s Lt. Governor, Dr. Ralph Northam. He waited to start daily medications because he felt I would grow out of my epilepsy, and he felt that the medications would impede my brain development and the ability to learn.
It was not until I turned 7 YEARS old that I was diagnosed with Dravet syndrome. I have been in the hospital more times than I can count, and I am very much at home there. I am very cognitively delayed, my parents don’t know if it is due to the thousands of seizures I have had, the daily pharmaceuticals, or the syndrome itself. I have tried and failed 17 different pharmaceuticals and combinations of them. I also failed two medical diets. Presently I take three pharmaceuticals (one of which is NOT FDA approved) and have a Vagus Nerve Stimulator implanted (like a pacemaker for the brain). Despite these treatments, I had over 1,023 visible, motor seizures in 2014. I have many other not easily seen seizures daily as well. What is really scary is that the benzodiazepines that I take daily have blocked all receptor sites causing any rescue drug from working. In 2013, I was given enough benzodiazepine rescue drugs over the course of 5 hours to render eight adults incapacitated. Even with those meds on board I continued to seize.
My mom was one of the parents that “championed” the Virginia legislation to allow possession on CBD oil and THCa oil in our state. I have been on the oil for two months. I feel so much better and can stay awake all day. I used to nap for a good 3-4 hours a day before my “Charlotte liquid”. My teachers and therapists say that I am more alert and quicker to responds. My mom says my seizures are down about 30% at this point. Most of that is because I am awake and all my motor seizures happen in my sleep. My parents are so encouraged by my progress and hope that we will see more improvements as time goes by.
My mom has also set up a website about my story atwww.haleyismyhero.com.