We quickly found out that since Sanfilippo is such a rare disease, we as parents, were going to have to fight for our daughter and find out everything we could...on our own. We were told when Reagan was diagnosed, that after our brief meeting with our geneticist, that we already know more about the disease than almost any medical professional out there. That’s when I truly realized that if we were going to try to save our daughter, most of the work to find out how would have to be done by us.
In the beginning of our research, I felt like I was getting lost on the internet. Being a teacher, with no background in medical research or business, I had a lot to learn. I still do. I am just at the tip of an iceberg of what we need to find out. My hat goes off to other family foundations out there that amaze me every day with their efforts in finding a cure to save our children. We would not be on the brink of a breakthrough without you. Thank you Ben’s Dream, Cure Kirby, Jonah’s Just Begun, CureSFF, A Life for Elisa, Team Sanfilippo, and so many more. Your efforts have inspired us and have helped us feel like we, too, can make a difference.