When I was eight years old, I started experiencing some very scary symptoms. My speech would sometimes come out backwards, or even worse, I wasn’t able to talk, my arms would fall asleep and my legs would seem to disappear from under me while I was walking, causing me to collapse; I was essentially experiencing mini strokes. After undergoing scans, MRIs and tests, I found out that I was having frequent transient ischemic attacks (TIAs), and I was diagnosed with Moyamoya disease, a rare condition in which the blood vessels that supply blood to the brain become narrowed and limit the flow of blood to the brain. To help reestablish blood supply to my brain, I underwent a nine-hour brain surgery at Boston Children’s Hospital with two surgeons operating on two different sides of my brain. I believe that surgery saved my life.
When I was in high school, I proudly wrote and self-published a book that helped explain Moyamoya to younger children in a way they could understand, and I was able to donate it to the Children’s Hospital. My goal for writing the book was to give children and their families a sense of hope. There were dozens of little ways that I was different from other children my age when I was being diagnosed and undergoing treatment – I couldn’t play an instrument, blow up a balloon, or ride on rollercoasters and I had to take medicine and go to regular doctor’s appointments, including annual MRIs. I wanted to help other children with Moyamoya realize that there was someone out there who understood what they were going through and how difficult it could be.