Some friends and family have seen our Jason go through this difficult time with the same helpless feeling us as his parents have felt. Some have suggested and asked if we would set this account up as a way they could help and show their support. With 3 brain surgeries in 4 years I'm sure you can imagine the medical bills and the mounting bills from the continued care Jason needs due to his latest complications. We are humbled by the out pouring of love and support we have felt and feel so blessed to have dear family and friends.
Our Sweet 7 year old boy Jason is the youngest of our 4 boys. He was born with a rare brain tumor called a Hypothalamic Hamartoma. This type of tumor is deep within the brain and is known to cause cognitive regression and multiply seizures per day. In an attempt to stop our son from having multiple seizures per day Jason underwent his first open brain surgery in 2010 when he was 3 years old. This would be the first of 3 brain surgeries in 4 years. Unfortunately the doctors were unable to get all of the tumor and the seizures returned after being seizure free for two years. The seizures returned with a vengeance sometimes having up to 20 per day. This was starting to cause Jason to have long term brain damage and we knew we would have to do yet another surgery. In 2013 Jason had Gamma Knife radiation to the tumor. This seemed like a less evasive option, unfortunately it was also unsuccessful and the seizure once again returned causing more brain damage. It was then we were told by our amazing team of doctors, at Barrows Neurological Institute in Phoenix AZ where all his treatments are, about a new laser surgery where they could go in and burn the remaining tumor. We thought it was our only option as we saw what the seizures were doing and were told eventually we could lose our son cognitively if we did nothing. So in August of 2014 we had the Visualase surgery, but something went very wrong. At first the doctors thought this could be radiation necrosis however after reviewing the most recent scans the doctors have determined Jason has suffered permanent brain damage to the cable system in his brain from a thermal burn from the laser. He is the first case ever known to have these adverse effects and have MRI and MRA images that look like his. Jason is now partially paralyzed on his left his side. As for right now he is learning to walk and use his left hand again and goes to rehab every day Monday through Friday from 9 am to 3 pm. He has become blind on his right side in both eyes due to surgery, which we were told is permanent also. But has been able to adapt to where you would never know it. With all this adversity our son faces he never complains. He is always "good" if you ask him and he is always smiling. He is a fighter and is one of the most positive people you will ever meet.