Sadness

We are happy to report that MPS Awareness Day was a success.  We gave away about 400 ribbons and 300 lollipops.  We concentrated mostly on Waverly's school and Matt's office.  I hope to post some photos soon of Matt and his coworkers and Waverly's teachers.  Next year I hope will be able to do more to raise awareness.  It ended up being an emotional day for me.  I wish that I didn't have to know about MPS.  But I hope that through our small efforts, we can work towards finding a cure.  I just want to give future parents a sense of hope when a child is diagnosed with Sanfilippo, rather than a sense of helplessness.

We had a wonderful weekend.  We spent some time exploring Virginia and visiting a few local festivals.  The kids love the people, music and of course fair food.  Last night I had dinner with 2 very dear friends.  They both have a child with special needs and so there is such a sense of connection among us.  I love my time with them.

Today has been a difficult day.  There is a sweet little boy named Andrew who has Sanfilippo.  He is 11 and his body is just not able to fight anymore.  They believe it will only be a short time until he passes.  His mom has been a source of encouragement and information for me.  I see Oliver in Andrew.  Every time I hear about a child dying, I can't help but personalize it.  Say a prayer for Andrew and his lovely family today.