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Rett Syndrome Does Not Define Her

Posted Oct 17, 2019 - 3:35pm

My name is McKenzie Tuckson. I am a fashion-forward and intelligent 16 year-old varsity cheerleader,  Ambassador of Nashville public schools, Vice President of my junior class and student advocate for the state of Tennessee. l live with Rett Syndrome, but it does not define me. I enjoy attending classes at Whites Creek High School with my friends and participating in my inclusion classroom. I enjoy praising God, traveling, swimming, dancing, cooking and advocating for teens.

But things haven’t always been so upbeat. It started out well enough. My mom was eagerly looking forward to the birth of her precious baby girl. I was about twelve months old, and I started losing skills I had learned. I couldn’t talk, and I couldn’t even use my hands to hold things or point to things. I felt afraid and frustrated, but I could not tell my mom what was wrong. I started getting angry and aggressive, but all I really wanted was for someone to help me.

My mom searched for answers for a long time. It wasn’t until kindergarten that my doctors finally confirmed that I had Rett Syndrome. Now things made sense. We learned that Rett Syndrome is the result of a rare genetic mutation. This mutation keeps my body from making enough protein for it to work right. Strange thing though, my brain was just fine. I could see, hear, and understand everything. I just couldn’t get my body to do what I wanted. Even walking was difficult and awkward.

Once they learned my diagnosis, I got a therapist so they could start working with me. I have had speech and occupational therapy for the last nine years. My family and I went to state and national Rett conferences to support and learn more about Rett research.

As I began to get better, I began to set goals for myself. I wanted to be in regular education classes, be a cheerleader and maximize my potential in education. Many people didn’t know what to do with someone that had Rett Syndrome; I was the first in my school system. We worked hard and goals were set and I began to make progress.

Living with Rett can be a frustrating thing to live with, but I have great friends and a great support system that help me continue to grow. Over the years I have had the opportunity to receive several communication devices to communicate with, like the Accent® 1000 eye tracking system and my trusted hipster. These devices have helped me to advance my communication skills and my life. This development was very essential to helping accomplish my goals.

I was able to program my cheers on the Accent and call them out for my squad at games. When people would ask, “How are you going to cheer?”, my mom would reply, “Just watch and see.” That was four years ago and since then I have been able to continue my cheering career through middle school and high school . My experience has been great and so many doors have opened for me because I had a voice, and for that I am grateful.

I have come a long way since finding out about Rett Syndrome. I use my experience to speak to therapists who plan to teach children with exceptional needs . I hope to attend college and make the cheerleading squad while earning a degree.

I would like to leave you with some words of encouragement that was told to me by someone special and it has had a lasting effect, and it states, “Always remember, you are braver than you believe, stronger than you seem, smarter than you think and loved more than you know."



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