Diagnosis

So, two weeks ago we went and saw the geneticist for our follow up appointment. Deep down I knew what she was going to say. I had prepared myself for it. But after we left and on the way home it hit me. My son was just diagnosed with Coffin-Lowry Syndrome. According to everything I have read he will be severely retarded. I was numb for a day or two and then I contacted the CLS parent support group and introduced myself and Andrew to the creator of the group. After a few e-mail back and forth she thinks that he was miss-diagnosed. She said that yes he has many of the features and attributes of the syndrome he doesn't have the "key" ones.  I am trying not to get my hopes up too much that she is right. We are raised to trust and believe out doctors, but she has a son with CLS and had been helping other families for YEARS and knows quit a bit about it. I am so confused. I love Andrew no matter what the diagnosis is.  He is my baby boy.