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.


erin heiser said…
I am hoping and praying for one too. I hate that there are other families experiencing this kind of heartache, but I am glad to hear that you are not feeling so alone.
Shannon, sometimes just being there and saying, 'I know how you feel, I've been there too' does the other person a world of good - more than you can imagine. That's not to say that we shouldn't be hoping and praying for a cure, but don't put yourself down and think you're doing nothing because you can't heal those who have MPS III. Lending a listening ear and a shoulder to cry on are both great things.

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