Jacob Harper has a bright smile. At 7 years old he has spent a lot of time with doctors and in the hospital.
Jacob and his parents, Melissa and Mark, are preparing for Jacob to have brain surgery in July and to spend a month after the surgery in Atlanta being monitored.
Jacob started having seizures when he was 3 years old, his mother said.
“At the time because of the slight nature and the way they first began, they weren’t sure that it was actually seizures,” Melissa said. “He wasn’t truly diagnosed until he was 4 with epilepsy.”
In the beginning the medicine seemed to work OK, according to Melissa. Then Jacob had his first grand mal seizure.
“Basically it lasted an extended period of time, and he convulsed like seizures that you see on TV,” his mother said. “When he regained consciousness in the hospital, my mother was there, and he didn’t know who she was. That’s when we realized how bad this was all going to be. General things that he had learned how to do very easily, like writing his name, colors, shapes, numbers, all that had to be retaught to him, and it was exceedingly difficult for him to relearn all of that.”
She said over the next few years he was placed on a variety of medications, and then the medicine quit working.
“He basically began having one seizure after another, and we would have to increase to a point where he would start to show liver and kidney problems, and then we would have to change medicines and go that route again,” Melissa said.
She said at that point they found a neurologist in Atlanta. She said the couple had “exhausted” their search for a specialist in the area capable of handling Jacob’s problems. They now take multiple trips a month to the children’s epilepsy center at the Children’s Hospital of Atlanta.
Jacob’s doctor told his parents about the option of brain surgery even though the surgery is not common for children his age.
“For him, it was a choice of surgery, taking that route, or letting this continue on,” Melissa said. “At that point they could tell that there was significant brain damage caused by the seizures. They can see it on the MRIs.
“Most children do not start having trouble with their bodies metabolizing the medicine until after puberty,” Melissa said. “That’s a common time for epilepsy to begin, or if they’ve already had epilepsy, either it suddenly ends there or it suddenly gets worse. I can’t imagine having it get any worse, and I can’t imagine having to wait until he’s 13 or 14. If we waited to that point, he would be incapacitated.”
She said the doctors began testing Jacob in October to see if he was a good surgical candidate. The doctors have found that his seizures originate in the left frontal and left temporal lobes. The doctors will go in and remove portions of those areas of Jacob’s brain.
“The hope is by doing that he will no longer have seizures,” Melissa said. “He’ll never recover the damaged area of his brain because at his age he should be able to regain function in other areas of the brain to make up for that loss.”
She and Jacob will have to live in Atlanta for a month after the procedure in order for post surgical testing to be performed.
“Of course, all of that is extremely expensive,” Melissa said.
To help defray those costs, a fundraiser is being held Saturday at Rincon First Christian Church from 11 a.m.-3 p.m.
“We’re going to have a barbeque dinner, silent auction, boiled peanuts. It’s just going to be a day of fun and fellowship,” Melissa said. “It’s a good way for everyone to come out and show their support for Jacob before he goes off and has his surgery done.
“It is devastating watching your child deteriorate before your eyes,” she said. “He has a lot of friends his age, and he sees what they are able to do, and he’s not able to do that. It requires a lot of patience. There’s a lot of humility involved too on our part. He’s able to tolerate all this so well. He smiles through it all. Anytime we start to feel kind of bad for ourselves, and ‘oh, how did this happen to us,’ we just take one look at him, and see it’s not bothering him, he’s OK with it.”
Melissa said Jacob is excited about the surgery and he’s actually happy doctors “are going to go in, and as he says, ‘cut his head open and cut out some of his brain.’”
Melissa said Jacob knows the seizures make him different and keep him from being able to do things that his friends are able to do.
“He wants to be a normal child,” she said. “We want above all for him to have a normal life. We want him to be able to accomplish any dream that he has, and that’s why we’re going to take this risk and do the surgery. It is a risk. Any time you talk about going in and doing neurosurgery.”
Mark explained that the surgery is very complicated.
“They are going to remove his skull for five days,” he said. “They are going to take his skull and put it in, I guess a freezer, so his brain will be exposed so the risk of infection is tremendous. It’s a six-day surgery.
“It’s not just a six-hour surgery. It’s about a four-hour surgery to put the grids on. Then he’ll sit for five days with the grids on, and then after that it will be another long surgery (about an eight-hour operation) to remove the portions of the brain and to put the skull back on, and screw it back down and staple his scalp back.”
Melissa said when the skull is removed, there will be an EEG grid placed directly on Jacob’s brain in order to “pinpoint precisely where his language area is, where his motor function area is, that kind of thing, and that way they’ll know we can only go to this certain point, and we can’t go beyond here.”
Jacob smiled as he looked at his parents. He said he likes the trips to Atlanta because of the games he gets to play, and he is looking forward to the surgery.
“(It’s going to) help me keep my seizures away,” he said.
