Not Alone

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.