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.