When Logan was diagnosed with CHARGE syndrome as an infant, his parents, Jenn and Richard Kile, were devastated and overwhelmed.” I remember that at one point I was just a heap on the floor, sobbing,” said Jenn. The NICU nurses quietly worried that Logan would be blind, deaf and mute. Because only one in 10,000 kids is diagnosed with CHARGE, most hospitals shuffle families from specialist to specialist, treating each condition in isolation. And that’s just how it went for Logan’s family.
When Logan turned 7 years old, they really started to struggle.” We’d been through so many things that weren’t working. Logan would be sick for weeks at a time and unable to get off the couch. He was missing school, he wasn’t growing — it felt like everything was failing. And the cycle just kept repeating,” Jenn said. That’s when a friend suggested they contact Cincinnati Children’s, where the team takes a comprehensive approach to treatment. This is especially important with a complex genetic disorder like CHARGE. Jenn remembers the call from Lucy Marcheschi, the nurse coordinator for what is now the CHARGE Center, like it was yesterday. “When I talked to Lucy on the phone, she cried with me,” said Jenn. “That’s when I knew we had the right team and the right people.” Soon after the call, the Kiles traveled from their home near Columbus to Cincinnati for a series of surgeries that changed everything — suddenly Logan was growing and going to school and doing all these things he couldn’t do before.”
“When we were first starting this journey with Logan, I didn’t feel like we were connected to the right people soon enough,” said Jenn. “For us, there are so many things that have happened just by being connected to the right people.” “This isn’t as scary as it once seemed. Logan has led us. He runs the show. And I don’t let those other things worry me,” said Jenn.” There are days when you feel frustrated and you just think that this is too hard. And then there are days where my child says, ‘Mom’ for the first time and you realize that it’s all worth it. The awesome days definitely outweigh the tough days.”
