Story
Like any new parents, having our first child was an exciting and life-changing experience. We prepared in all the ways most parents do to welcome Kennedy into the world. But on April 1, 2014, when
Kennedy was diagnosed with Prader-Willi Syndrome (PWS), our lives changed in ways we couldn't have foreseen and did not yet fully understand.
PWS is a complex genetic disorder that occurs approximately in 1 out of every 15,000 births. PWS is a life-threatening medical disorder affecting hormones, muscle strength, appetite, behaviour, cognition, pain tolerance, sleep patterns, and many other medical complications.
Since PWS is such an extremely rare genetic disease, there is little available in terms of resources, services, awareness, therapy, and research to help those with this syndrome live a full and independent life. Many with those PWS will need constant care for their entire
lives.
I have decided to take on the challenge of running the London Marathon to help raise money for PWSA. As Kennedy's mother, this marathon is nothing compared to the daily challenges those with PWS and caregivers experience daily.
All money donated will go toward those living with PWS, including Kennedy, to help provide the caregivers, resources, services, and awareness needed to ensure they have a full and independent life.
Please donate—we need your HELP!!