Thank you for visiting our fundraising page. Our son, Carter, was born with a genetic condition called Prader-Willi syndrome (PWS). As a newborn, he was unable to eat on his own, requiring an NG tube and then a G-tube for feeding. He was in the Birth-to-Three program prior to transitioning to the Special Services program at our local school. He received numerous therapies, including speech, physical, and occupational, to assist him with his fine and gross motor developmental delays, and continues receiving special services as a freshman in high school. Carter follows with an array of medical specialists, and will continue to need assistance throughout his lifetime. He has been a trooper for his 15.5 years of life, and we are hopeful that research will aid in making his life easier in the future.
Prader-Willi syndrome (also known as PWS) is a randomly caused genetic disorder (due, essentially, to a missing slice of genetic material) that typically results in mild to moderate cognitive impairment, developmental delays, behavioral difficulties, and a chronic feeling of hunger which, absent close supervision, leads to excessive eating and life-threatening obesity. It is the leading genetic cause of obesity in children, it affects one in every 12,000 to 15,000 live births of any race or gender, and currently there is no cure.
Our goals are to bring awareness of this disorder further outside the circle of people directly affected by it, and to raise money to benefit all people affected by PWS. To that end, we are participating in the 2017 Walk & Roll for PWS in Durham, CT. We are so grateful to everyone who has supported our efforts in the past through your presence at the events we've hosted or participated in, and your donations. We would love to have you join us at this year's event as part of our team, Carter's Crusaders. Please consider spreading the word to friends and family members to help raise awareness of this syndrome, as well as making a donation, both of which will aid us in reaching our goals. We envision a world where Prader-Willi syndrome is commonly known in both the medical community and society. We hope for the day when medical research identifies the genes affected in those with Prader-Willi syndrome and treatments are available to repair those deficiencies. We pray for a cure for our sweet boy. With sincere thanks for your support, Michele & Troy Shingleton