Johnathan’s Story
Johnathan was born on June 10, 1999. When Johnathan was almost one month old, he started having seizures and that’s when we found out that his right frontal lobe of his brain was deformed. We started him on medicine and for the most part it controlled the seizures. Of course, we had to continue to raise the dose as he grew, but other than that, he was fine. He only had seizures in his sleep.
When he was 2 years old, he started having seizures while he was awake also. We added new and more medicines as he grew. We found out he could have any type of seizure and over the years he had at least one of every type.
By the time he reached 4 1/2, he was seizing every two minutes and no medicine was working. In fact, he was on the maximum that an adult would be taking on two of the four medicines. On April 27, 2004 he had an 8th of his brain removed. The part they removed was seizing having sub-clinical seizures 24 hours a day. He was like a new child after the surgery! We were able to get him off of most of the medicines getting him down to one med.
Over the years we have been working our way back up with medicines. He is on 4 different seizure ones right now and we can’t go a year without having to change and/or raise them. Shortly after the surgery, the Dr. had let us know that there was an 80-95% chance that he would have to have a second surgery sometime in his life. If we do the second surgery, he will come out with a stroke and will have to try to regain his gross motor skills but would most likely never regain the fine motor skills and sight in the left eye. As a family we decided that we would go ahead with another surgery if/when the time comes. We know from experience that the medicines stop working for him after a while and we will eventually run out of medicine choices, especially if they run short on funding. We would rather have him in a wheelchair but cognitively still be able to learn and do things and be seizure free than to still fight seizures and lose his cognitive learning. After all, people in wheelchairs (if he never learned to walk again) have been known to do amazing things.
As of today, Johnathan is doing well with school and with his seizure control. He still struggles with migraines and with his motor and verbal apraxia. He is an amazing little man that has touched many people lives throughout the country. We were blessed with cards from some of the people his life has touched while he was having his surgery back in 2004. We continue to pray that God will allow him to touch many more lives of people around the world and bring them closer to the Lord.