Dana said her son was premature at birth, but it wasn’t until little Hunter reacher 18 months that life would change in the Shaffer house. She said he had an all-day fever that was capped off around 7 p.m.
“He climbed onto my lap and then had his first big seizure,” Dana said.
After an emergency trip to the hospital, Dana and her husband were informed that it was an epileptic seizure. The early word was it could be a one-time event that would not return, or it could be a situation the young Hunter would continue to experience. It didn’t take long to see the latter choice was to be his fate.
Hunter has been diagnosed with refractory epilepsy for which there is no cure or even a solid medication to help ease the seizures.
“Right now the seizures are coming from multiple parts of the brain,” said Janet Mau from Mahoning Valley Epilepsy in Austintown. “It makes it impossible for surgery.”
There is hope down the road. Mau said when someone goes through a change in life such as puberty, the seizures can concentrate on just one part of the brain, making the patient a good candidate for surgery.
“We are hopeful, but we also know the odds,” Dana said.
In the meantime, treatment and procedures are running up the bills. Although the Shaffers do have insurance, the co-pay has been pretty large. Dana mentioned an emergency that landed Hunter in the Cleveland Clinic for four days. The insurance covered 80 percent of the $76,000 bill, but the remaining 20 percent was more than $15,000. On top of that are some expensive medications and treatments that have the family cutting back.
Dana said they have cut back as far as they could, watching every penny of the family budget. They don’t have extra spending money and have had to let go of all luxuries of life. Dana even had to give up on babysitters as no one wanted the job when they found out what was involved. That meant Dana had to leave her job and the Shaffers became a one-income household.
“My husband and I can’t even go on a date,” Dana said. “We have to be with Hunter 24-7.”
While it can be trying, there are times that showcase the reason they sacrifice so much. Dana said they traded in their vehicle on one with a lesser payment. When they visited the showroom, the car salesman was in a really bad mood. By the time they were finished with their transaction, the salesman was smiling.
“Hunter has that affect on people,” Dana said. “He just has a natural ability to make people smile.”
While they continued with their struggle to make ends meet, they found out through family and friends about the MVOCC and how they choose a child to help each year with the proceeds from their annual Cars in the Park show at Boardman Park. To be considered, Dana had to write a letter about Hunter and the family situation. It was reviewed by a committee and Hunter was selected as this year’s benefit recipient. He also plans on making an appearance at the show on Aug. 7. He will also be helping bring awareness to epilepsy for the thousands that attend the show.
“Epilepsy needs to be in the spotlight so people can be educated,” said event chair Rich Posivak.
To help with that education, the Mahoning Valley epilepsy organization based at Crestwood Center in Austintown will have a tent set up at the show where people can stop and learn more about the many people who have learned to live with epilepsy as well as the treatments that are helping those people live fuller lives. The organization has worked with area residents in programs such as the dogs that can detect an oncoming seizure as much as a half hour before it happens.
In any case, the annual car show could see more than 400 vintage, custom and specialty vehicles, which will make Hunter happy.
“I like cars,” he said.
He is sure to get his fill as his family gets some much deserved help through the donations. Dana said she has set up a fund at a local bank for funds such as those coming from the car show. The money is then used to ensure Hunter has the medications and treatments he needs.
Article Photos
Photo by J.T. Whitehouse, Town Crier
Hunter Shaffer, 4, shows off his favorite Hot Wheels car with his mother Dana, Mahoning Valley Olde Car Club’s Cars in the Park chairman Rich Posivak, Janet Mau of Mahoning Valley Epilepsy, and MVOCC publicity chair Dee Tripp.