As a baby, Simon Lewis regularly suffered from febrile seizures. When it seemed he outgrew them around age 2, his parents felt relief. However, that respite from seizures only lasted about a year. When Simon was 3, he once again began experiencing seizures, but this time his health was continually worsening.
Like any mother determined to see her child well again, Valerie Lewis began seeking care from pediatric neurologists, but she soon realized she wasn’t comfortable with the level of care Simon was receiving near their small town in Kentucky.
Desperate to find Simon the help he needed, Valerie took matters into her own hands.
“I researched every children’s hospital in a major city within a six-hour driving distance,” she said.
Valerie specifically sought out a hospital with an epilepsy monitoring unit (EMU), and she was surprised at how many hospitals weren’t equipped with that level of care for epilepsy patients—some had never even heard of an EMU.
When she first called Le Bonheur Children’s Hospital, her fears began to subside.
“There isn’t a technology that Le Bonheur doesn’t have. It’s truly amazing. Dr. [Stephen] Fulton and his team did more for Simon in 24 hours than other doctors had done in two and a half years,” Valerie said.
Not only does the hospital have an EMU, but Simon, now 7, was quickly assigned to epilepsy coordinator, Karen Butler, who has been a vital part of their journey.
“Karen actually told us all about FedExFamilyHouse,” says Valerie.
Without FedExFamilyHouse, Valerie doesn’t know how they would be able to handle the family’s visits to Le Bonheur three to four times a year. Not only is FedExFamilyHouse a saving grace financially, but also logistically, as it is located just across the street from Le Bonheur Children’s Hospital.
“It’s truly our home away from home. We love it there, and we love the people. The house and the hearts of the volunteers are just so precious to me,” she explains.
Although some days can be very difficult, as testing has shown Simon experiences a three to four-second seizure every minute, the quality of life he has thanks to the care at Le Bonheur is truly a miracle.
“When I drive over that hill on Poplar Avenue and see that Le Bonheur heart and FedExFamilyHouse, I just let out a breath because I know we’re where we need to be. All the stress I didn’t even know I was holding in is just let out because we’re home.”
Valerie knows this is where she and her boys are safe, cared for and loved, thanks to the lifelong connections they’ve created through FedExFamilyHouse.