How JEA Started...
My name is Bella and I have had quite the journey with Epilepsy to bring me to this point! This site if run by my mom, Courtney, and I. My hope for this site is to bring awareness and give back to individuals living with epilepsy. Outreach, networking, group meetings, classes, education, and more. This is an ever evolving journey where our passion and purpose coincide. Our creative outlets allow us to channel many emotions that accompany an Epilepsy diagnosis. Here is my story! In August 2015 I had my first grand mal/tonic clonic seizure. My friend stayed the night that night and reacted perfectly and got help when I wasn't responding. To make a long story shorter...After a week of testing it was determined that I was born with an abnormality in my left frontal lobe. I present with 3 different seizure types. The medication I'm taking works for 2 kinds but not the partial seizures (silent seizures). After trying many medications it was determined that my partial seizures are medication resistant and that's when I became a surgical candidate. I had 2 surgeries in the summer of 2016 in hopes of removing the focal point and abnormal cells. During the first surgery I suffered a very serious complication. The MRI scan showed that I had suffered a brain hemorrhage from the depth electrodes. I had to stay in ICU for 19 days. It is a miracle that I have recovered completely with no complications. The doctors were not able to remove the abnormality because it was too close to the expressive language part of my brain and the motor strip. I will keep fighting to become seizure free. In November 2017 I had to undergo my third surgery in NYC. The neurosurgeon implanted a device known at the RNS system. This is a new treatment for individuals that have medication resistant partial seizures. Throughout this experience I have realized how fortunate and blessed I am. There have been so many people that have supported my family and I. I just want to give back to other kids and families that may need some financial , mental health, networking assistance, or support knowing that they are not alone! My mom and I have always enjoyed the arts, fashion, sewing, painting, pottery, etc.... We thought that selling some of our handmade, hand sourced, and original graphic products would be a great start to giving back. Currently I am a college student at the Art University of San Fransisco studying graphic design and merchandising. We hope to evolve our advocacy into group sessions, and networking events as we progress. Thank you for taking the time to read my story!
DIRECT LINK QUESTIONNAIRE FOR EPILEPSY SUPPORT
Please fill out this questionnaire to connect directly with the owners of this PAGE. We will be able to direct you with next steps regarding your Epilepsy support. All responses are confidential. Click on the word form below to open a new window.