Thanks Kelly!
I am following suit with Kelly and posting some links to visit to help you become more aware of Sanfilippo and encourage you to visit.
Team Sanfilippo seems to be the most promising avenue for potential treatments or a cure.
Founder/Parent Team Sanfilippo Foundation:
http://www.saratogian.com/articles/2009/12/26/news/doc4b35a28ca94f1292560757.txt
First family I saw online when we were waiting for a diagnosis:
www.couragemovie.com
Interview with Grace's mother:
http://abcnews.go.com/Health/video/graces-story-10012107&tab=9482931§ion=1206835&playlist=3547557&page=1
