My name is Randon and I am a senior. I have Prader Willi Syndrome, a rare genetic disorder that typically causes low muscle tone, short stature, cognitive disabilities, problem behaviors, and a chronic feeling of hunger that can lead to excessive eating and life-threatening obesity. Even though I don’t like dealing with all of this I can’t change my condition so I manage as best I can.
One of the hardest parts is that I have trouble walking. When I was a freshman, the doctor took back and leg x-rays. When my mom saw them, she said my spine looked like a snake crawling every which way - I had scoliosis.
My orthopedic surgeon said my bones weren’t fitting together right, which was making me crooked. The bone in my legs were also crooked, and though he could operate, he didn’t think he should because I would have to use crutches for such a long time.
So my mom and I traveled to Kansas City where the specialist said he could do the surgery but warned that there might be some pretty nasty side effects, including not recovering completely. We decided I should have this operation, so we travelled to Kansas City for appointments that tested my breathing capacity, the condition of my bones, and my blood. I also had to see a nutritionist and lots of other specialists who gave us tasks to do before the surgery.
On the morning of my surgery, Mom, Dad and Pastor Colaw gathered around my bed to pray. The surgery took all day and when it was done they wheeled me into the recovery room. I woke up with an oxygen tube down my throat. My parents were there but I couldn’t talk, I felt like I was choking. Finally I got the tube out and could talk a bit but I couldn’t move. I had to stay in intensive care and was hooked up to lots of machines.
Each day I progressed and one by one shed the machines. I could have a little ice at first, then some water and soda. I wanted to eat soup and real food, but they wouldn’t let me until my digestive system was working better. My therapist came every day to help me walk a little, going farther each day. When I could walk to the activities room and manage stairs, I could go home.
A week later I was ready to go home, but then I got an infection. People sent me lots of balloons and presents. One lady from church even gave me a back pillow, movies, and books. I got cards every day and friends came to visit. I couldn’t go back to school so a paraprofessional came and helped me do my work. I used a wheelchair and learned to use a walker. Finally, I could manage with just a cane and was ready for school.
The surgery really helped me, even though it and the recovery wasn’t a lot of fun. But I knew what I had to do so I could be straighter. I am thankful to have rods in my back to help support me. I was fortunate to find a doctor who could operate and for all my friends who helped me get through this difficult time.
I have come to know that through faith I can deal with all the things that make me different from my friends. I know God made me the way I am and He will help me get through the obstacles of Prader Willi Syndrome. I try not to let problems get me down. I just need to face them and get through as best I can.
All these experiences make me a better and stronger person. I know my future is uncertain but I will get through it. I have learned that I will not succeed if I don’t try. My goal is to walk across the stage at my graduation, and with the help of my parents, my friends, and God, I will do it.
For more information on Prader Willi Syndrome, check out www.pwsausa.org
This piece has been published in Teen Ink’s monthly print magazine.