A STORY OF JONATHAN – Jonathan Story
We’re originally from Florida, and that’s where Jonathan was born. About two days after he was born, his dad and I noticed his breathing was very abnormal. When asleep, he was breathing very shallowly so they took him to the NICU to observe and run tests for a few days. They didn’t find anything, so they sent us home and we took him to his regular doctor for a follow-up; not even his pediatrician could diagnose him.
In January, we decided to move up here to Atlanta. That’s where Jonathan’s dad is from, and Jonathan is named after him. Jonathan kept getting worse. He couldn’t keep anything down, and he wasn’t gaining weight. We brought him to Children’s Healthcare of Atlanta at Hughes Spalding, and he was soon transferred to Egleston where he’s been since Jan. 26. He stayed in the PICU until mid-April.
They decided to try some genetic testing and, yup, he was diagnosed with a rare disease called congenital central hypoventilation syndrome. Basically, when he’s asleep he doesn’t get a signal from his brain telling him to breathe.
CHOA is truly amazing, and the nurses are wonderful. I know they love Jonathan
