This Friday May 18th, at 9pm Central ABC’s 20/20 program will be airing a special feature on the new laser treatment for hypothalamic hamartomas. This is exciting information for all of us at Hope for HH and indeed for the entire HH community. It also has some very personal meaning for my family. Several years ago, Dateline NBC aired a segment called “CJ’s Story”. It was the story of our journey to Royal Children’s Hospital in Melbourne, Australia for surgery with Dr Jeffery Rosenfeld. Dr Rosenfeld had recently pioneered a way to navigate to the region of the brain called the Third Ventrical, from the top of the skull. The Third Ventricle is where most HH lesions reside. Some are contained within the ventricle, some fall below and some are a combination of the two. At the time of our story, Dr Rosenfeld was the only surgeon using this approach for HH and his success rate was outstanding. However, the surgery still came with great risks….stroke, bleeding, and quite possibly death. We were even told that there was a real possibility that our son would never be able to store a new memory again – ever. Quite literally, everything he was exposed to would go in one ear and out the other. A frightening thought. However, we did our research, spoke to many of the parents whose children had gone before us and we made the decision to give CJ the chance of a seizure free life. CJ was only 4 years old at the time and the youngest patient to have the procedure. He was patient number 25.
Fortunately, as many of you know, our story has a very happy ending. Dr Rosenfeld was able to remove a large portion of the HH and CJ was seizure free for several years. We will be forever grateful to the team at Royal Children’s Hospital for stepping out and dedicating their efforts to making a difference for all of our families. I truly believe their willingness to do the seemingly impossible changed the treatment of HH forever. We all now had hope.
This Friday’s 20/20 program is also the story of 2 brave families that traveled a long way from home in hopes of making better lives for their children.
My heart goes out to these brave parents – they did their research and took a chance at giving their children a life free of seizures. I can tell you from experience, it is NEVER an easy decision to make – to voluntarily take your child into surgery – and especially a surgery that is cutting edge and not common practice. You pray, you agonize, you cry, and you search your soul for the right answer. Then you do what you think is right.
We are blessed to have Dr Curry at Texas Children’s with his innovative thinking, his courage to reach beyond the current practice and to seek out a better, less invasive answer. That is what we need from our medical professionals today. Especially those dealing with a rare disorder that has so many baffled. I am grateful that there are individuals working at companies like Visualase who have the brilliant minds to develop the technology that will make invasive surgery a thing of the past.
For those of you still seeking answers for your loved one with HH – you are making tough decisions every day. But know that pioneers of all types are blazing a path for you and we all can be filled with Hope that someday the tough decisions will be a thing of the past.