Local media coverage about Sanfilippo and how it has devistated our lives....
http://www.wcpo.com/news/region-northern-kentucky/abigail-means-family-friends-race-for-cure-of-little-girls-deadly-genetic-disorder

They said there is no treatment, no cure! It is a devastating diagnosis of a genetic disorder, Sanfilippo, of my sweet 4 year old, Abigail. As a parent to feel so helpless is terrifying. I want to fight for the cure that is in the making. The progression of this disease is terrible as she will mentally and physically regresses until death unless the cure comes in time for Abigail.

For more info on Sanfilippo  - curesff.org