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Chester County Press

Local boy now set to receive potentially life-changing procedure

02/26/2019 12:46PM ● By Steven Hoffman

The family, friends, and supporters of Kevin Lightner are all cheering the news that he could soon receive a potentially life-changing surgical procedure that doctors have said could bring his seizures under control.

Kevin, a twelve-year-old sixth grader from Avondale, has been suffering seizures since 2015. The seizures can occur at any time, and Kevin sometimes suffers between 25 and 50 of them in a day, so they are extremely disruptive to his life. His parents, Lisa and Dan, have been taking him to New York City to be treated by a neurological team at Mount Sinai Hospital. The neurological team recommended a surgical procedure to insert a Responsive Neurosimulation (RNS) device to help control the seizures, but Aetna, the family’s insurance company, rejected the surgical procedure twice. The Lightners filed a third appeal to the insurance company in late 2018, praying that they would win the appeal so that their son could have the procedure that could potentially change his life for the better.

Lisa Lightner said that the family learned that they had won the appeal in early February. The family was able to schedule the surgery for March 6.

“We’re very relieved,” Lisa Lightner said of the decision about the appeal. “And we’re so appreciative of the community’s support.”

She said that even after receiving the good news by telephone call and by email, she was nervous all over again when the letter arrived officially putting the decision in writing.

“There was still a part of me that worried that they could rescind it or say that it was a mistake,” she explained.

Now that the surgery has been scheduled, the family is busy making the plans that it needs to make in order to prepare Kevin for the surgery. Lisa said that she’s nervous, but she will also be glad when her son is able to have the procedure completed.

Kevin 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 more than three years ago. The seizures are most likely related to a chromosome condition that he was born with.

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 as needed.

The Lightner family hopes that the device will help allow their son to return to how he was before the seizures started, when he was full of energy and active. As result of the decision on the appeal, the Lightners won’t have to wonder what kind of a difference the RNS Device would have made on Kevin’s life. Once the surgery takes place on March 6, Kevin can move forward with the next chapter of his life.

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