Our son, Windsor "Win" Drewry, was born with a rare genetic condition called Prader Willi Syndrome (PWS). Currently, the most salient feature of PWS for 3.5 year old Win is low muscle tone. He didn't start walking until 2, and now wears a back brace (for scoliosis) and ankle braces (for general support). He does lag behind his peers in gross motor skills.
But Win is so much more than this diagnosis. He loves going to preschool, playing in the sandbox with our chickens, building pillow forts with his brother, and telling nonsensical knock-knock jokes. He is sweet, smart, and funny. We adore him completely - and are lucky to have many folks in our lives who do, too.
Right now we're in the "easy" phase of PWS. We advocate for him, take him to therapies, adhere to a special diet, and try to raise him as we have raised his typical brother, Wash. Down the road, though, our PWS journey will likely be more difficult. Anxiety, impulsive behaviors, food seeking, and hyperphagia (insatiable hunger) are all possibilities. Our hope is that Win will live his best, independent life as an adult. Research and new treatments can make this possible, which is why I fundraise every May for PWS Awareness Month. If you are able to donate any amount to the Foundation for Prader Willi Research, our family would be deeply appreciative. Every dollar takes us a little closer to #winning.