I was living the life of luxury – chicken tenders were brought to me on call, buckets of toys were given to me daily and staying up until midnight was not optional, but mandatory. With endless hours of fun and no restrictions, I was living the dream of every child – a 24/7 sleepover! For me, that week-long stay in the Epilepsy Monitoring Unit (EMU) at Texas Children’s Hospital did not feel like a confinement at all, but was an opportunity to enjoy and explore. Being a young child at the time, I embraced my situation with youthful optimism. I remember enjoying the company of the nurses and playing video games until I got bored.
All the while, my mom sat anxiously by my bedside wondering how the seizures I had been having since I was three-months-old were affecting my health. In that week, I experienced a few seizures and was further confirmed with having partial complex epilepsy. I was put on a regimen of Trileptal and my seizures have been controlled ever since. I firmly believe the expertise of the neurologists at Texas Children’s is what allowed my case to be a success story. Now, I aim to follow in their footsteps and become an epileptologist. Due to my personal connection to epilepsy since childhood, I have an insatiable curiosity and motivation to learn more about the condition that affects me and many others. The physicians on the epilepsy team at Texas Children’s have been helping me achieve this goal. Over the summer, I was graciously given the opportunity to shadow my doctor, Dr. Irfan Ali.
I followed him during clinical rotations, observed cutting-edge brain surgeries and learned how to read EEGs and MRIs. I worked in the EMU, but this time seeing the behind-the-scenes work done by the doctors. Because of Dr. Ali’s kindness, I had one of the most meaningful experiences in my life, particularly because I saw patients who reminded me so much of myself at a younger age. I also have been given the opportunity to do research with Dr. Anne Anderson, one of the doctors that I met while shadowing. She was incredibly generous in welcoming me into her lab.
For six months now, I have been doing research on Angelman Syndrome. I have learned advanced laboratory techniques, received hands-on experience with mice and conducted an experiment that I submitted for the school science fair. I found a better method to genotype, a procedure used to screen for differences in DNA strands. I tested various experimental conditions (eg: ambient and storage temperature, presence of enzymes etc.) to find out which ones were best to maintain DNA’s integrity. The results of my experiments will help scientists around the world to store their DNA so that their genotyping results will remain as accurate as possible.
My observations will help to reduce misinterpretations in genotyping data and therefore, increase precision. I am thankful to Dr. Anderson and her team for an invaluable experience in epilepsy research. A cherry on top was when I recently found out my research project won the highest prize offered in the district science fair – the Grand Award, and I can now showcase it at the City Science Fair! As a Camp Counselor for the Epilepsy Foundation, I have met many other children who share my condition. I have heard horrible stories of how some of them were bullied by other students and even undermined by some teachers because of their seizures. This really breaks my heart and I would like to tear down the social stigma associated with epilepsy. In addition to my own personal suffering, this is what drives me to become an epileptologist and to find a cure for all of us in the epilepsy community.
I am determined to not allow epilepsy to limit my potential and I hope my story will inspire children and their parents to do the same. We all need to know that it is possible to lead a fulfilling life even if you are an epileptic. My dream is to use all the excellent training that I have received from the physician-scientists at Texas Children’s to build my own clinical and scientific legacy – one that forever change the way the world looks at epileptics, like me.