Dealing With A Rare Disease: Turning Anger Into Action

BY MELISSA GOETZ Like most mothers-to-be, I waited for my daughter to be born with the usual mix of anticipation and hope. I couldn’t wait for her to arrive, and I dreamed that she would be healthy and happy and full of spirit. I could never have anticipated that my experience would propel me to learn about a rare genetic disease that I had never heard of before. Or that my daughter would inspire me […]