“That’s when I knew we had the right team and the right people.” “When I talked to Lucy on the phone, she cried with me,” said Jenn. Jenn remembers the call from Lucy Marcheschi, the nurse coordinator for what is now the CHARGE Center, like it was yesterday. This is especially important with a complex genetic disorder like CHARGE. Here, the team takes a comprehensive approach to treating all of the conditions together. That’s when a friend suggested they contact Cincinnati Children’s. And the cycle just kept repeating,” Jenn said. He was missing school, he wasn’t growing-it felt like everything was failing. Logan would be sick for weeks at a time and unable to get off the couch. “We’d been through so many things that weren’t working. When Logan turned 7 years old, they really started to struggle.
And that’s just how it went for Logan’s family. The NICU nurses quietly worried that Logan would be blind, deaf and mute.īecause only one in 10,000 kids is diagnosed with CHARGE, most hospitals shuffle families from specialist to specialist, treating each condition in isolation. “I remember at one point that I was just a heap on the floor, sobbing,” said Jenn.ĬHARGE is an abbreviation for the common features of the disorder: coloboma, heart defects, atresia choanae (blocked nasal passage), growth retardation, genital abnormalities and ear abnormalities. When Logan was diagnosed with CHARGE Syndrome as an infant, his parents, Jenn and Richard Kile, were devastated and overwhelmed.
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