My name is Bella and I have had quite the journey with epilepsy to bring me to this point! The picture on the left was taken after my first brain surgery. (Aug. 2016) The picture on the right is a recent photo of my sister and I. I am on the left and Katie is on the right. My hope for this site is to bring awareness and give back to individuals living with epilepsy. A portion of all profits will be donated to families of individuals living with epilepsy like me! 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 assistance or support knowing that they are not alone! My mom and I have always enjoyed doing crafts. We thought that selling some of our handmade products would be a great start to giving back. Currently I am an athlete, honor student, friend, sister, daughter, and advocate. Thank you for taking the time to read my story!
Link to NYU Langone Epilepsy Center- This site has resources and contact information to my full neurology Team and Epilespy related information