Oliver and I flew to Minneapolis last week for his final visit in the Natural History Study for MPS III A. (Wavey was a bit under the weather, so she will go in the spring.) We always love these trips. It feels great to be doing something - anything to further Sanfilippo research. Plus we are able to see some old friends, ride the carousel at the Mall of America and enjoy the city. Oliver was a wonderful little traveler. It was actually a lot of fun to have an adventure with him.
The first day is filled with developmental assessments. Since our last visit one year ago, he has lost about 7 months of cognitive development. He stayed about the same in his gross motor skills, but we saw the most loss in fine motor. The results were expected, but that certainly does not make it easy to hear.
He did well with all of the medical testing done under general anesthesia. The only issue was he gets so nauseous when he wakes up. We actually ended up in the ER that night, for another IV bag of fluid and some additional medication to help stop the vomiting.
I am so glad Oliver was able to participate in the Natural History Study. I hope the information he provided over our 4 visits will give future doctors and researchers a much better understanding of the syndrome and how best to treat it. It is sad that 2 years later, we don't feel that much closer to a cure or effective form of treatment. I no longer believe Waverly or Oliver will benefit from the research. However it is my hope that future families will not have to watch their children regress and die much too early, thanks in part to Waverly & Oliver's participation.