My nephew, James, has Prader-Willi Syndrome (PWS). PWS is a genetic, complex, life threatening medical disorder that affects the body's hormone system, muscle strength, cognition/learning, behaviour, pain, sleep, temperature regulation and appetite. For someone with Prader-Willi Syndrome, the feeling of fullness after eating does not exist. This is combined with a decreased metabolism requiring half the calories of a typical person of the same size and weight. There is no cure for Prader-Willi Syndrome but continued research makes it hopeful.
By participating in this walk-a-thon, I am helping to raise money for research, raise awareness of PWS and support my nephew as he faces struggles every day.
The picture to the left is of last year's walk-a-thon - the first one for Pickering. James is in the orange shirt, leading the walk. He was thrilled to see so many people come out to support PWS research.
My sister-in-law put together a video that shows James' perseverance despite having PWS.