Last Friday I was saying goodbye to a dear man. A quiet and humble man whose 90 years on earth included several spent in the skies over Europe in a P51 bomber at the tender age of 19. Through the interest of my son, his stories and memories of WWII came to light. Photos and mementos, long stored in boxes were brought out and shared.
As we moved forward in the stories of the last century, I mentally drifted to the subject of Prader-Willi Syndrome. Before growth hormone, before physical and speech therapy, before food security, even before diagnosis, there were people, pioneers if you wish, researching, treating, parenting and educating those with Prader-Willi Syndrome. For many, the diagnosis was long in arriving. They struggled to find anyone who could help them understand what their child had, understand the symptoms and challenges they faced. Pioneers, they were without Google, Facebook, support groups, specialists. Because of their determination, their dedication to their children, progress was made and continues on. Today we see children growing well into adulthood. We have learned and discovered much in the care and treatment of PWS. There is still work to be done; needs that are unmet and bureaucracy to battle but research continues, advocacy is taught, empathy and support offered. The pioneers, giving their knowledge and sharing their experiences to those coming along next.
"All truths are easy to understand once they are discovered; the point is to discover them."