Overcoming Brain Surgery

Contributed by Abby Lampley

When I was three years old, I started having seizures and was diagnosed with Rasmussen's Encephalitis. Rasmussen's Encephalitis is a rare brain disorder that basically causes seizures while it eats away at one hemisphere of the brain.

The only cure for this disorder is having the diseased portion of the brain removed through a type of brain surgery known as a hemispherectomy. I had this surgery done when I was four years old. The surgery saved my life, but there was a cost. I lost my left peripheral vision from each eye and my left side was paralyzed. Doctors weren't even sure how much I would recover.

Growing up, I had to learn how to do everything with one hand. Between going to school, doing my chores and sleeping, I spent hours doing therapy with my parents. Sometimes, my little sister and I would even “play” therapy. A lot of people told me that I couldn't do certain things because of my left side and I worked hard to prove them wrong.

When I was twelve years old, I met other kids like me for the first time ever. I was the oldest of the kids, but just seeing that I wasn't alone changed my life. I learned that I was doing very well and that I had to keep doing well to show the other families what their “hemi kids” could do.

I started using my voice to share my story when I was thirteen. Once a year, I would go to the Dreams on Wings 5k fundraiser and speak in front of everyone or just talk to each family personally. I only talked about how I was able to do certain things, but I realized that just by being me, I was shining hope to other families with kids like me. During the year, I would keep in touch with these families through Facebook or email.

At age eighteen, I traveled to Baltimore for the Hemispherectomy Foundation's international conference/reunion. Cris Hall, the president of the foundation, had asked me to come to the conference and speak on the Young Adult panel. I spoke in front 200+ people at the conference and I spoke to almost all the families individually. Being able to speak and make an impact was awesome for me, but being with other people like me, younger and older, made it so much more special.

I am nineteen now and have reached my dream of living on my own and of being able to hold a job. Between work, school and therapy, I stay in touch with my friends in the Hemispherectomy Foundation and I still do public speaking. I've spoken on the radio, for the news, in classrooms, and at club meetings.

Recently, I spoke at the Wasilla Rotary Club. This is a club made up of people who do good deeds and want to better the community. I was asked by a friend of mine to share my story and to introduce the Broken Butterfly project that I am working on starting. My goal for the Broken Butterfly project is to bring together Alaskan families who are dealing with the challenges of brain disorders or injuries. After I finished speaking, I was overwhelmed by the support that I received from the people in the group.

I've learned that it's not the fact that I am living with half a brain that impresses everyone. It's the fact that after everything that I've gone through, I am able to bounce back and stay positive. It's my resiliency that gives people hope.

Everyone that knows me, says that I am something special. I know that I am, but I also know that I wouldn't be who I am today if it weren't for God. He gave me a second chance to live and I am just trying to make the most of it.