Hi! My name is Jacob. My family and friends call me Jakers. I am 17 years old. The picture above is of Jacob's Seizure Destroyers walking at the Epilepsy Foundation's 2015 Summer Stroll in Philly. From left to right my family is: Aga, my sister Hali, Mom, Gammy, Dad, Uncle Gary, Nurse Crystal, Cousin Vaughan & Aunt Lisa. When I was little, I could do lots of things; I could walk independently without the use of assistive devices, using sign language I could tell mom & dad if I wanted “more” or I was “all done”. I could feed myself using a spoon & I gave the world’s best high 5’s. Mom & Dad could count the number of seizures I had in a year on one hand. In December 2005, when I was 7, I started to have seizures more often. By November 2006, I had lost weight and my appetite was not good so I had a feeding tube put in so I could get my nutrition and seizure medications. I also started to get nursing at home since I was much more medically involved. In February 2007, I went on the Ketogenic Diet to try and help control the seizures. Over 90% of the foods I ate were all fat. The remaining 8 – 9% were protein & carbs. WOW!! Mom & the nurses worked so hard measuring to the gram every single thing that I ate and making sure I had the right amount of calories. At first the diet worked great, my seizures went from 150/month to 75/month. It was a honeymoon period and before long my seizures became more frequent. I began to lose skills and had an extremely high risk of injury due to the drop seizures that happened without warning. So in 2009, I had brain surgery (Corpus Callosotomy) to try and stop the drop seizures. A Vagus Nerve Stimulator (VNS) was also placed in my chest. Unfortunately, the surgery was not a success and the VNS, which has been activated more than 10,000 times in 6 years, does not stop the seizures. The neuro-medical team has advised that I have another brain surgery, but my parents do not want me to have to go through it again. In August 2014, I was one of the first 150 kids in the United States to start on the Cannabidiol trial. Again the medication seemed to work at first but once the honeymoon period passed, my seizures increased. Today I can have anywhere between 350 to 1,200 seizures per month. They occur while sleeping or when awake. The worst are the tonic clonic clusters that can last up to 20 minutes. I have to get oxygen and rescue medications which greatly affect my quality of life. With this new diagnosis of KCNB1, we have renewed hope that we can find a new medication to control my seizures and enhance my quality of life.