February 28th, 2014 will be a day that will forever be burned into my memory. It was the day we sat down with our geneticist and genetic counselor to hear our daughter's prognosis of living with Sanfilippo Syndrome. At first, of course, I felt complete devastation. The life I had always dreamed for my daughter had shattered. Even though at the time I had a seemingly happy healthy child, I was grieving as if I had already lost her......at least the loss of the life I had envisioned for her. I don't think anyone can put into words the kind of pain you feel when you're told your child is going to suffer and you can't protect them....that you're basically going to watch them slowly die before your eyes. I found that when I let myself feel that pain, I cry and cannot stop. And I soon realized that this was not going to help my daughter at all. I needed to do something, so after a few days of grieving and shock, my husband and I took action. We refused to believe that there was no cure or treatment. Thus, the research began. I also stopped focusing on the facts of the disease, and started to focus on my faith. We believe in miracles and started praying!!!! We know Reagan is our tiny miracle and she is going to beat Sanfilippo!!!