Battling Bruin: Peyton

Posted October 2018

My name is Renee McKay Snyder. I graduated from UCLA in 1999 with a B.A. in economics. I loved being a UCLA Bruin! During my time at UCLA, I was a Kappa Alpha Theta, and – in 1997 and 1998 – I was a UCLA cheerleader. I have so many wonderful memories as a Bruin and am honored that my daughter has been asked to be a part of the Battling Bruins.

My daughter, Peyton, is six years old and has Prader-Willi Syndrome (PWS). PWS is a rare genetic disorder that occurs in approximately one out of every 15,000-30,000 births. Children with PWS are missing a piece of their 15th chromosome, and this affects hormones, muscle strength, behavior, cognition and learning, temperature regulation, pain tolerance, sleep patterns, and appetite. One of the most challenging and defining symptoms of PWS is hyperphagia, or an insatiable appetite. Children with PWS feel hungry all the time, regardless of how much they eat. They also struggle with a slow metabolism and must keep on a very strict diet. Individuals with PWS require constant supervision to prevent life-threatening obesity and death.

When Peyton was born, she was weak and struggled to eat on her own. When she was 10 days old, she was readmitted to the hospital for 'failure to thrive'. After three weeks of testing, Peyton was diagnosed with PWS, an uninherited genetic condition. Peyton needed a feeding tube and oxygen during her first year of life due to her poor appetite and low muscle tone. Individuals with PWS benefit from growth hormone therapy, and, since Peyton was five months old, she has received nightly injections of growth hormone to help normalize her height, muscle tone and cognition. Peyton receives over 600 hours of therapy a year, including speech therapy, occupational therapy, physical therapy and behavioral therapy to help her to meet her many milestones.

Peyton is a fun-loving and determined little girl. She is filled with so much love and joy despite her many challenges. Peyton just started first grade in a typical classroom with a one-on-one aide, speech therapy, occupational therapy, physical therapy, specialized academic instruction and necessary modifications. Peyton loves school, and she works so hard to do the things that may come so easily to others. She loves her friends, the color purple, babies and all animals.

Peyton is such a blessing in our life and we are committed to doing all that we can to minimize the challenges ahead. Our goal for Peyton is independence. Peyton is thriving, thanks to research supported by the Foundation for Prader-Willi Research, but we know that the challenges of Prader-Willi Syndrome change throughout life and that her syndrome is progressive. Currently, Peyton has a heightened awareness of food, although her hunger drive is still manageable, for the time being. It is undeniably essential that we continue this research so that our little girl continues to be enabled to live her life to the fullest. We know that, through medical research, we can eliminate the many hurdles that Peyton and others with PWS face on a daily basis.

You can view Peyton's video to learn more about her journey with Prader-Willi Syndrome.

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