We put our heart out there and they shared it back with us.

Parents of a son with SanFilippo Syndrome talk about how open they were about Ben and his prognosis, how comfortable they were talking about it, and because of that they had a lot of support because people felt comfortable with Ben and the disease and with the family. It was a great life-embracing, almost spiritual thing. He was open, we were open, he had a way of moving into people’s hearts and spaces and we just followed his lead and it gave us strength.”