This is us. A seemingly typical family to the outside world – a mom, a dad, a daughter and a son.
However, in 2011 when our daughter was born and she was diagnosed with Prader Willi Syndrome. A rare and life threatening genetic condition caused by a partial deletion on her chromosome 15. A condition that will cause our daughter to feel hungry every moment of her life. A hunger that could drive her to eat herself to death if she is not constantly monitored and kept safe. A disorder that predisposes her to easily become obese and acquiring additional life threatening health conditions.
It is our family’s goal. Our mission. To raise awareness for Prader Willi Syndrome. We work to educate people about our daughter and others with the same life threatening condition. We fund-raise, we educate, and we work hard to have the tools to give our daughter the best possible future.
Please follow our Prader Willi Journey as we work hard to raise awareness and to Fight the HUNGER!