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Neurology Now:
doi: 10.1097/01.NNN.0000436403.34187.92
Departments: Speak Up

Benefit of the Doubt: The gift that has helped me thrive with Prader-Willi syndrome

Stanley, Katherine

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Author Information

Katherine Stanley is a senior at C.D. Owen High School in Black Mountain, NC, where she lives with her family. Her book, A Book of Bullies, is due to be released in November 2013

All expectant parents hope for a perfectly healthy child, but sometimes it doesn't happen that way. I was born with Prader-Willi syndrome (PWS), a condition my parents had never heard of until I came along. PWS is rare, occurring in approximately 1 in 15,000 births. Like many children born with PWS, my muscle tone was poor and I had to be fed by a tube. I'm sure my parents were upset, but they never showed it, at least not to me. I was always loved and encouraged. The greatest gift my parents gave to me, besides their love and support, was the benefit of the doubt.

PWS is caused by an abnormality on the 15th chromosome affecting the hypothalamus. This area of the brain produces hormones that help regulate body temperature, hunger and thirst, mood, sexual development, and sleep. People with PWS suffer constant hunger coupled with slow metabolism—a very bad combination. My parents were told that food would have to be kept under lock and key because I would not be capable of controlling my eating. But they didn't accept that advice without giving me the benefit of the doubt. I was taught from a very early age that I cannot eat as much as others, and that when I want a snack, I must ask. I proved to be capable of learning to control my urges. No locks were necessary.

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Another characteristic of PWS is low IQ and learning disabilities. My mother thought I was capable of succeeding in school because I learned my ABCs when my older sister prepared for kindergarten. Because of my diagnosis, I would have been sent directly to the special education class—in fact, my muscle weakness prompted a therapist to pull me out of class, where she worked with me to grasp doorknobs and jar lids. But my mom insisted that I remain in class during lessons. She convinced the school to give me the benefit of the doubt. She wasn't absolutely certain that I would get passing grades in a regular classroom, but she felt that I should be given the chance. If I failed, we would have accepted special education classes. I am now a high school senior, and I have managed to earn good grades in all my subjects.

People with PWS often have difficulty controlling emotional outbursts. Sometimes I do become overly emotional. But by disciplining me like any other child, I was taught that tantrums are never rewarded. Now, when I feel a meltdown coming on, I take some time alone to get a grip.

Life with PWS hasn't been easy. I was ridiculed and bullied in school. I have taken those bad experiences and written a book. Some people might not think I'm smart enough to become an author, but A Book of Bullies is scheduled for release in a few months by Grateful Steps Publishing ( gratefulsteps.org). Not giving up on myself has paid off for me. You'll never know what you can do if you don't try.

PWS is not curable. I'll always have to deal with the circumstances that genetics forced on me. Some things I can't do as a result of my condition, and I will always be different. I am, however, thankful that my family gave me the benefit of the doubt and encouraged me to have goals and believe in myself. I do the best I can with what I have. I am just the way God made me and I love my life.

© 2013 American Academy of Neurology

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