semi-coherent ramblings and such....

It's funny how you can be both excited about a trip and dreading all that it entails. In early April we will once again be making the trip to Beijing for a second round of treatment for Tatyanna. Initially our plan was to follow her original doctors to the new hospital that they have recently established. Lured in by the idea of a potential new treatment involving a gene therapy component as well as the shiny newness of the facility, it was an easy sell to a set of desperate parents. Then, as it so often seems to, the proverbial rug was yanked from beneath our feet and we were left wondering if we had made the correct decision after all. The lack of information regarding the new therapy was disconcerting and logically it didn't add up. My slightly unused scientific mind finally started thinking of the right questions and when the answers didn't match up to our satisfaction we really started to wonder if we had made the right choice. After several conversations with respected people in the Batten's community we decided to completely alter our course of action and will be taking Tatyanna back to Tian Tan Puhua. It was not an easy decision but for the first time in the last month, I feel good. All of a sudden there is a sense of peace that things are the way they should be. We know the treatment protocol at Tian Tan and we know the outcome. It's not a cure but the changes that we noticed in Tatyanna were substantial and it went a long way to increase her quality of life over the last year. We are familiar with the staff and the surrounding area. While I agree that there is a time when you should push the envelope, I don't think that for us, this is that time. There's a huge difference between a viable working therapy and something that is still highly experimental. I'm all for trying something new if it makes scientific sense but the new therapy just didn't fall into that category. I do however strongly believe that gene therapy will ultimately be the cure for Batten Disease, I just don't believe that anyone has that cure yet.