Every year the Battens Organization in the US holds a conference for all the families affected by Battens disease. This was important for Mark to attend so that he would have the opportunity to meet face to face with the pharmaceutical companies that are currently researching new potential treatments and gene therapy cures. He was able to spend time with other families in our situation and learn about ways they cope with the day to day stress, as well as the challenges. This treatment is still so new and no one is really sure what to expect, but there was a sense of hope that a gene therapy was closer then we think.
I wasn’t quite ready to bring the kids and see the other children that are in various stages of this disease, so we took a pass. We hope to go next year when the diagnosis isn’t so new and hopefully they will be much closer to a cure.