One year ago today I was flying back to the US with both kids to take Waverly to CHoP. It was the beginning of a very long journey. These next few months are going to bring up a lot of memories as anniversaries of diagnoses arrive. I just heard from a friend who has a little girl Waverly's age with Sanfilippo. They received the devastating news that their baby boy also has Sanfilippo. I was hoping and praying that he would be spared from this horrible disease. I am so sorry that she has to face the loss of 2 children, too.