We knew something was wrong but we did not know what. After having two other children, we knew that there was something that was not quite right. Our concerns were dismissed but we knew something was amiss with our third child. We went to all kinds of specialists, trying to determine what was the cause of the problem. Doctor after doctor, office visit after office visit, but still no answer. Maybe it was nothing. Maybe everything will be okay. But as we sat the doctor’s office with a geneticist in Miami, she brought us the bad news. The tests have confirmed that your daughter has Prader-Willi syndrome. I had never heard of this before. What is it? What does this mean? Is there a cure? Is there a treatment? How did this happen? What did we do wrong? Are they sure that this is right? What now? So we left the doctor’s office, walked to the car, and started the 90 minute drive home. There are no words to describe the various emotions that came over us. There were no words to say. There were no answers, no help, no comfort, and no way forward…

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