Kevin needs a chance to get his life back
By Steven Hoffman
The Lightner family is hoping for a miracle this Christmas season.
Kevin Lightner, a twelve-year-old sixth grader, suffers from a life-threatening seizure disorder. His parents, Lisa and Dan, have been taking him to New York City to be treated by a neurological team at Mount Sinai Hospital for over a year. The neurological team has recommended a surgical procedure to insert a Responsive Neurosimulation (RNS) device to help control the seizures, but Aetna, the family’s insurance company, has rejected the surgical procedure twice already. The Lightners are awaiting a decision on their third round of appeals to the insurance company for a surgical procedure that holds the promise of helping their son immensely. For the third round of appeals, an independent, same-specialty doctor will review the appeal. A decision on the Avondale Borough family’s appeal could come later this month or early in 2019. Kevin's life could hang in the balance.
“I’m not being dramatic when I say that we’re trying to save our kid’s life,” Lisa Lightner explained during an interview last week. The family is also taking the drastic step of starting a fundraising campaign just in case the insurance company rejects the third appeal.
According to Lisa, Kevin started suffering from the seizures in 2015. He is autistic and has already faced developmental challenges throughout his childhood, but the seizures profoundly affected his day to day quality of life once he started having them three years ago. The seizures are most likely related to a chromosome condition that he was born with.
“He went from having no seizures at all to having between 25 and 50 each day,” Lisa explained.
The seizures can occur at any time so they have really disrupted Kevin's life.
One illustration: On a recent trip to the grocery store with his mother, he suffered a seizure that was so severe that he fell to the floor. He was wearing a helmet―a requirement now because the seizures are so regular―and he was in a special Caroline’s cart. But he still fell out of the cart and hit the floor, bruising his hip in the process.
There have been numerous times when he has sustained bumps and bruises, and a few times he suffered cuts that required stitches.
“Scenarios like this are all too common for Kevin, and I want him to have his life back,” Lisa said. “He can't do anything unassisted, not even walk around his own home.”
Lisa explained that Kevin is a strong, resilient kid, but he needs help to address the medical condition properly. The RNS device is the best option for the Lightner family, but the device is typically used for those who are 18 years old and older. According to Lisa, there have been instances where insurance companies have approved the RNS device for an off-label use because of its effectiveness in reducing seizures. What the RNS system does for a patient's brain is somewhat similar to what a pacemaker can do for a heart. It can monitor brain waves, and can respond to activity that looks like a seizure or is different than the usual brain activity. The device would also allow the medical team to monitor the activity and make adjustments to Kevin's treatment.
The Lightner family hopes that the device will help allow their son to return to how he was before the seizures started. Lisa explained that he was a typical boy who loved his dogs and liked to eat pizza. He enjoyed running races and visiting amusement parks. He had good mobility and energy back then.
“We want him to do all those things again,” she said.
Shortly after Kevin suffered the recent seizure in the grocery store, Lisa decided to take a step that she and her husband did not want to take. They started a GoFundMe page to raise money that they would need for Kevin's surgery should it be rejected by the insurance company again. The Lightners pride themselves on being hard working and self-reliant. But the family doesn’t want to waste precious time if the third appeal to the insurance company is denied.
“We knew a fundraising effort wasn’t going to happen overnight,” Lisa explained. “We knew that it would take time.”
The goal of the fundraising campaign is to raise the $150,000 that it would cost for the surgical procedure.
One important reason that the Lightners don’t want to delay the surgical procedure for any longer than is absolutely necessary is the fact that Kevin carries an extremely high risk of SUDEP, which is sudden unexplained death from an epileptic seizure.
“Kevin is at a high risk of SUDEP,” Lisa explained, “and the device is the only thing that is proven to reduce that risk.”
In addition to the risk of SUDEP, Kevin’s life is impacted significantly by his ailment. He attends school at the Devereux CARES School in Downingtown, but the constant threat of a seizure makes it challenging for him to keep up with normal activities. He must also have an adult with him wherever he goes.
“That's no way for a 12-year-old to live,” Lisa explained. “The medication that he's on makes him nauseated and tired, and he sleeps about 12 hours a day. He's really not up and active unless we're right there with him.”
According to Lisa, the RNS device offers the family hope of reduced seizures―and a better life for their son.
“His quality of life is so poor right now,” Lisa explained. “Kevin will likely never be seizure-free, or medication-free, but both will likely be greatly reduced with the implanted RNS device.”
A recent study of long-term treatment with the RNS system based on 256 patients across 33 epilepsy centers found that treatment with the RNS device resulted in significant seizure reduction and improved quality of life for patients. In some cases, the patients were able to be seizure-free for periods of longer than a year, while a large percentage of patients saw a 50-percent seizure reduction.
Kevin’s nine-year-old brother Brian is rooting for his older sibling. The Lightners included a short note of support that Brian had written on the GoFundMe page. It reads:
“I want my brother to have this surgery because I want his seizures to stop so that he can be more involved in family.”
Lisa emphasized that the family is hopeful that they will get approval on the third round of appeals to Aetna. Should they prevail, any contributions collected through the GoFundMe campaign will no longer be necessary, and the money will be refunded.
Information about the family's fundraising campaign can be found on the GoFundMe website by searching “give-kevin-his-life-back.”
A direct link to the GoFundMe page: