Our son Windsor (“Win”) was born with a rare genetic disorder called Prader Willi Syndrome. There are several stages in PWS. In infants, it manifests as hypotonia (low muscle tone) and poor feeding. Later in life, people with PWS may develop hyperphagia (insatiable appetite) and a variety of behavioral issues including food-seeking behaviors and OCD. Currently, there is no cure and generally people with PWS are unable to live independent lives.
All that said, we are very hopeful. Win has been getting a human growth hormone shot every night since he was three months old – this is the standard of care for PWS and helps with physical and cognitive development. He eats a carefully designed diet. He gets speech, physical, and occupational therapy. Most importantly, he is a smart, happy, funny little boy who brings so much joy to our family.
May is PWS awareness month and we are fundraising for the Foundation for Prader Willi Research, an organization that funds crucial research including clinical trials that could have a huge impact on Win's life. FPWR has provided us with so much support and hope. We believe that Win’s life will look very different from the clinical description that we received in the NICU, and will do everything we can to make that happen.