Klippel-Feil Syndrome
I know, you're wondering what the title is, what it means, and why I'm writing about it. Klippel-Feil is a disorder I would never have learned about if not for one of my dear online friends, Janie's, son being diagnosed with it as a baby. Jon is 13, a triplet and one very handsome boy. He also has a tough life because of this rare disorder. Klippel-Feil is rare, estimated to occur in 1 in about 45,000 births worldwide. No accurate numbers are known, because there haven't been any studies to determine how often it occurs. Janie found out one of her babies was in trouble before he was born, so she and her husband had a heads up that there might be medical interventions for Jon, but not exactly what he'd need. Klippel-Feil causes a myriad of issues, one is 'blocking' of vertabrae, another is scoliosis. Jon has both. There are neurological, cardiac, ear/nose/throat and urogenital problems. Like diseases like Cystic Fibrosis and Down Syndro...