Lafayette man and family ready to fight seizures

But what may appear as normal on the outside, is anything but that on the inside for him. It all started one random morning when he was just 13-years-old.

Posted: Sep. 17, 2018 12:14 AM

LAFAYETTE, Ind. (WLFI) - It’s a normal Sunday for Jacob Gilkey and his family. Watching as the Colts play the Redskins on the television.

“The Giants are my favorite team actually,” said 27-year-old Gilkey with a laugh.

But what may appear as normal on the outside, is anything but that on the inside for him. It all started one random morning when he was just 13-years-old.

“It was just, it was a shock,” said Gilkey’s mother, Chrystal Alley.

Gilkey had woken up with a strong headache that no over-the-counter pain reliever could fix.

“I had a brain tumor in 2004 and that’s pretty much what caused me to have seizures,” he said.

Seizures that now leave him with troubles like mobility and independence.

It was one of the largest tumors the doctors at Riley Children’s Hospital had ever seen. The procedure to remove the tumor took 27 hours.

“They're guessing that it had been growing for about three or four years and we didn't have a clue," said Alley.

A reality that is hard for this mother to grasp about her seemingly healthy and normal teenage child.

"I mean this was in December and he had been in football camp at McCutcheon the summer before,” said Alley, still with the shock in her eyes.

Since 2004, it has been nearly 15 years of trial and error of medications and therapy procedures for this family. Gilkey was, at one point, on seven different seizure medications.

They had to travel to Bloomington everyday for six weeks to go through treatment to stop the tumor from spreading. Alley said it seems to have worked thus far.

"We just can't seem to find a combination that works,” said Alley. “It's non stop."

His local neurologist suggested he try Responsive Neurostimulation, or RNS. It’s a procedure that puts a sensor under the scalp that wires to the brain. It can detect and even stop a seizure before it happens. But there is just one problem.

“No one in Indiana, or in Lafayette, does it,” said Gilkey.

So the family had to travel to make multiple trips to Chicago for evaluations and eventually the procedure.

"When he had the first one put in we definitely saw an improvement," said Alley. So much improvement, that his seizures went from multiple per day to just multiple per month.

But then there was yet another problem.

“I’ve had radiation on my head so it’s breaking down so I had to have it taken out,” said Gilkey.

The skin on his head was too weak due to years of various types of radiation exposure. So now they are trying it for a second time, this time placing the sensor in his chest and wiring it up to his brain.

Alley said though it seems like her son has been a guinea pig for all these medications and procedures, she is happy knowing the trial and error her son is going through could help other patients dealing with intense seizures in the future.

But she hopes this is the last test her son has to go through to get his life back.

“My son has not known normal since he was 13-years-old,” she said. “I want to see him get a job, go back to school if he wants to, have friends, go out, even live on his own at some point...just normal.”

Alley has been able to finance all his procedures due largely to the support and generosity of friends and family. She said because the RNS procedure can only be done outside of state, Indiana Medicaid won’t cover the expenses.

And even though she said she doesn’t like having to ask for help so often, she is ready and willing to do whatever it takes.

“I am a single mom and taking care of him is my job,” she said.

All because she, and her whole family, believe Gilkey has earned a chance at a normal life.

“We have so many hopes and dreams for Jacob,” she said. “He deserves this chance.”

Gilkey will get his new RNS on September 26th. The family has a GoFundMe page to help cover the expensive costs of the procedure.

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