They began to search all over the world for anyone doing anything. They came across another family that has pioneered Gene Therapy replacement. These clinical trials have shown success within the CLN6 variant. We did join their team of scientists to replicate the same practice but for Sebastian’s variant of Batten disease CLN8. Unfortunately, we have been unsuccessful in getting pharmaceutical companies, research hospitals, and studies completed due to the fact that Sebastian is ultra-rare. He is the only known human currently with a split gene mutation of batten disease CLN8. We are currently trying to get Sebastian onto other approved drug therapies as we now know that gene therapy and other treatments are not available for him at this time and may never happen. We are still waiting. Sebastian is slowly dying. Time is the enemy.