Finally!!!

I was so excited to open an email I received on Friday afternoon. A doctor at OSU, who I happened to contact soon after the kids were diagnosed, sent me a message about some research she is conducting on Sanfilippo Syndrome types A & B. (Waverly & Oliver have type A.) I couldn't reach anyone until yesterday morning, when I spoke with the research assistant. They are focusing on how the immune system is affected due to the disease. It will require a simple blood test, that can be done in the pediatrician's office. The immune system has never been studied in children with Sanfilippo. This is a starting point, but they are finally starting. As a mom, there is nothing more frustrating than feeling unable to do anything to help your children. While my hopes aren't high that a treatment will be found that will reverse the damage already done to Waverly & Oliver's brains, I am hopeful that eventually a treatment will be discovered to help the Sanfilippo kids of the future. And maybe one day, a cure. Our family will do whatever possible to eliminate this awful disease and not allow another parent to be told their child is going to die much too early and there is nothing we can do about it.