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.
Jacob earned his angel wings on Nov 14, 2017 after going into status epilepticus that resulted in a medically induced coma lasting 18 days and the complications it resulted in over the following 9 months. I honestly believe that Jacob gave us that time to learn, to grow and to accept the inevitable. We were able to make the decision with the support of Jacob’s healthcare team and our family and friends to take Jacob off of life support as he earned his wings with grace and dignity and his loving family around him. Now our angel on earth is our angel in heaven.
Jacob continues to give us many gifts. Jacob is with me as I navigate the halls of CHOP, volunteering to give back to the hospital and to families that are facing extreme uncertainty everyday. Jacob is with us as our family lives life without his physical presence, yet being able to move on and embrace life knowing that he is giving us the opportunity to enjoy the little things. Jacob is with me, giving me the courage to write this.
We are so grateful that November 14th, Jacob’s angelversary, is KCNB1 Awareness Day. We will use this day always to celebrate the lives of our warriors Jacob, Charlotte and Jordyn, knowing they are at peace, watching over and guiding us! We celebrate all of the brave, determined warriors and their families living with KCNB1 each day fighting to be all that they can be. We will continue to advocate for awareness and someday a cure!
Slow and steady!
Never give up HPE!
Jacob earned his angel wings on Nov 14, 2017 after going into status epilepticus that resulted in a medically induced coma lasting 18 days and the complications it resulted in over the following 9 months. I honestly believe that Jacob gave us that time to learn, to grow and to accept the inevitable. We were able to make the decision with the support of Jacob’s healthcare team and our family and friends to take Jacob off of life support as he earned his wings with grace and dignity and his loving family around him. Now our angel on earth is our angel in heaven.
Jacob continues to give us many gifts. Jacob is with me as I navigate the halls of CHOP, volunteering to give back to the hospital and to families that are facing extreme uncertainty everyday. Jacob is with us as our family lives life without his physical presence, yet being able to move on and embrace life knowing that he is giving us the opportunity to enjoy the little things. Jacob is with me, giving me the courage to write this.
We are so grateful that November 14th, Jacob’s angelversary, is KCNB1 Awareness Day. We will use this day always to celebrate the lives of our warriors Jacob, Charlotte and Jordyn, knowing they are at peace, watching over and guiding us! We celebrate all of the brave, determined warriors and their families living with KCNB1 each day fighting to be all that they can be. We will continue to advocate for awareness and someday a cure!
Slow and steady!
Never give up HPE!