This is Noah and I'm Jeanette, his mum. Noah has a rare genetic condition called Prader-Willi Syndrome, (PWS). There are many variables, including low muscle tone, delayed learning, behavioural problems to name but a few and the inability to feel full. The good news is there are several new drugs in trial phases, that could be the key to helping PWS children. The downside is money and time. I'm running / walking a virtual marathon 42.2km and Noah is coming along for the ride to help raise money to give our gorgeous PWS kids the chance to have the life they deserve.