Joubert Syndrome: One Teen Shares Living with a Disability

What Is Joubert Syndrome?

My name is Noldon Starks, and I am a senior at Shaker Heights High School. I have Joubert Syndrome. Joubert Syndrome affects my speech, my balance, and my coordination. Most normal things take me more time. For example, I take longer on homework assignments and tests than other students. It also takes me longer to tie my shoes. I did not walk independently until I was about three and a half.

When I was in elementary school, people would look at me funny. Other kids teased me by imitating my head motions. They would ask me why I shook my head, but at that age I was too embarrassed to tell them.

Living with Joubert Syndrome Symptoms

My disorder doesn’t prevent me from doing the things that I want to do, though. In the summer of 2008, I traveled to  London, England, with People to People Student Ambassadors. The whole trip was a good experience. I met new friends, and I got out of my comfort zone. But, there was one event that changed my life: repelling off a castle. When I entered the castle, we had to walk up these narrow steps; it seemed like one thousand! When I got up to the top, I thought that I would be scared, but I wasn’t. When I finally decided to go down the castle, everybody immediately started cheering for me. At that moment, my feelings about Joubert Syndrome were just erased from my mind. When I got finished repelling off the castle, I wanted to do it again. It was exhilarating.

Now that I’m in high school and the teasing has faded off a little, I don’t feel embarrassed when people ask me why I shake my head. I just explain my situation to them. That moment in London gave me the power to be myself.