About the family pulled from www.extremesimmons.com
When the Starkweathers learned their son, Ethan, had Prader-Willi syndrome at only a few weeks old, it was devastating. A rare genetic chromosomal disorder, Prader-Willi causes low muscle tone, labored speech, trouble breathing, and because of a malfunctioning hypothalamus, a constant feeling of extreme hunger. Amy was given a grim diagnosis: Ethan would fight her for food, he could never be integrated into a classroom and he would be morbidly obese. There was little known about the disease, and there was no cure. After Ethan’s diagnosis, Amy spoke with doctors and intensely conducted her own research. She and Toen vowed they would do everything in their power to make sure Ethan had the best life possible.
With a severe case of Prader-Willi, Ethan has trouble walking and speaking and is always hungry. No matter how much he eats, his brain never gets the message that he is full. He also has a low metabolism, so although he’s hungry all the time, he can’t eat as many calories as a normal 9-year-old boy. His disease is not only uncomfortable; it is life-threatening. Because of his low muscle tone, Ethan stopped breathing one night. His father ran into his room, called 911 and gave him CPR until the ambulance arrived, saving his life.
Over the past eight years, Amy has developed a structured system for her son that has given him the opportunity to manage his illness effectively. Ethan has specific times for meals and snacks each day. To lessen Ethan’s expectations of getting food, the family has to lock up the refrigerator and kitchen cabinets and block off the entrance to the kitchen during the night. Ethan has a breathing machine and monitor in his room. He goes to doctor’s appointments and multiple treatments each week, including physical, speech and horse therapies.
Although Ethan suffers daily, he has a positive attitude, and his smile and laugh are contagious. Because of his parents’ attention, knowledge and love, Ethan maintains a healthy weight, is in a normal fourth-grade class in school and was even on the honor roll this past semester.