There is a forum for parents of kids with MPS. I have found it so helpful. There is so my experience among all the moms and it is so nice to communicate with people who understand. I am sad tonight. A friend of mine, whose daughter has Sanfilippo and is a few years older than Waverly, is going through a period of decline. She is still medically healthy, but losing skills. It is just so sad to have to watch this happen to your child. And then another family has a daughter Waverly's age who was just diagnosed with Sanfilippo the day after Christmas. I feel so much for this family. I remember that week after the news of Wavey's diagnosis. It is still so fresh. I hate that another family has to experience the horribleness of this disease.
I just wish that I could do more. I want to try to save families from the helplessness that comes with the MPS III diagnosis. There is no cure or treatment, but I am hoping and praying for one.