A six year old boy with Prader Willi Syndrome (PWS) is preparing to go to his Kindergarten class in North Valencia, but is becoming wildly upset because there is a slight change in his schedule today. His meals, carefully portioned to diabetic calorie levels, will be supervised by his classroom aide to ensure his safety. A thirteen year-old girl with PWS rides a horse at the Carousel Ranch in Aqua Dulce. She is strengthening her core and building better balance and coordination, but will struggle with keeping up with other kids and other complications of having low muscle-tone her entire life.
Prader-Willi syndrome impairs growth, causes weak muscles, developmental delays, and severe behavioral symptoms similar to Autism. Its hallmark and most life-limiting symptom is an insatiable appetite no matter how much food is eaten. Unmanaged, PWS causes morbid obesity and premature death. PWS is not an eating disorder; it results from missing genes. No known medication controls or even reduces the drive to eat. People with PWS cannot live independently. Without 24/7 supervision for the entirety of their lives they will die prematurely as a result of choking, stomach rupture, or from complications caused by their behavior or morbid obesity. Parents and care providers of someone with PWS experience some of the highest levels of stress. Today there is hope. With an accurate diagnosis and appropriate supervised care, people with PWS can live healthier and happier lives.
Prader-Willi California Foundation is sponsoring its 2017 PWCF Charity Golf Tournament event on February 18 at Robinson Ranch Golf Club in Sand Canyon. Registration begins at 7:30 a.m.; the shotgun start is at 9 a.m.; the fun lasts until 2 p.m. Golfers and non-golfers alike are invited to enjoy a continental breakfast and BBQ lunch, fun contests and raffles, a silent auction, and refreshments throughout the course. Event sponsors include Henry Mayo Newhall Hospital and Lucille’s Smokehouse BBQ. Come on out for a great day and be a part of something big and meaningful!
For more information and to register, sponsor, or donate visit www.pwcf.org or call Rodney at 818-723-2656. Visit us on Facebook at 2017PWCFGolf.
