March 2016

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By Rebecca Wolf McWilliams Via The Mighty Monday, February 29 was Rare Disease Day. In my wildest dreams, I never thought this day would hold such profound meaning for me. Yet when your beautiful child is born and swiftly diagnosed with a disorder that randomly affects one in 15,000 births, Rare Disease Day immediately becomes a permanent part of the fabric of your life. Lately it’s hard for me to imagine that there was a time when I had not heard of Prader-Willi syndrome (PWS). It seems nearly impossible that I lived over two-thirds of my life completely ignorant to something that is now such a huge partRead More →

Via The Mighty “Dear Friends, Family, Neighbors, Acquaintances and the Community: My child has been diagnosed with cancer. We’ll be in the hospital for months during treatment. Away from home. I know this news has shocked and upset you, but please don’t cry on my shoulder as I am unable to support you. Cry with me but not to me. We appreciate your thoughts even if I don’t reply to your texts, emails or messages. Answers to questions are hard to form in my mind, but I might manage a yes, no or thanks. Until we set up a social media portal to make news updates to you all,Read More →