With a huge list of decisions before us, we did make one decision. We are NOT going to pursue the transplant for Waverly. Unfortunately, the disease has progressed too much in order for her to benefit. Plus, her risk factors are too high based on her age. We are still thinking about Oliver, who the doctors at Duke feel is an excellent candidate. Our time at Duke and UNC was very helpful. The doctors were incredibly helpful, in that they have seen 40+ kids with Sanfilippo. They are more knowledgeable than just about anyone on this disease. We feel fortunate to have been able to spend a week with them. I will write more details later. I am still exhausted from our trip.