That next day, Drake preferred sleeping over eating. But then, that’s common with newborns. Tarah and Eric would wake him for feeding, careful to make sure he got plenty of nourishment.
By Saturday, these experienced parents became uneasy. Drake was just too lethargic. It was harder to wake him for feedings. The O’Sullivans called Drake’s doctor and were assured there was nothing to be concerned about; Drake had been healthy when he left the hospital two days ago. And, the doctors’ office assured them, they would be checking him again on Monday at a scheduled office visit.
But the O’Sullivans’ disquiet grew by the hour. By Sunday evening, Drake would not open his eyes or respond to them. He was growing limp and struggling to breathe. The O’Sullivans rushed Drake to the hospital where the staff flew into emergency mode. Too sick for care at the local hospital, Drake was stabilized for transport to the pediatric intensive care unit (PICU) at Greenville Memorial Hospital. Just 72 hours after birth, Drake lapsed into a coma. And no one knew why.
That unforgettable night was the beginning of a long journey of test after test and a diagnosis by elimination.
Drake continued to decline as each negative test pushed aside another horrible possibility. “You would think that eliminating terrible diseases would be a good thing,” says Eric. “But that just meant we were looking at something very rare.”
Finally, blood tests revealed an ever-elevating level of glycine in Drake’s blood, a symptom of an extremely rare, genetic metabolic disease called nonketotic hyperglycinemia or NKH.
The words “nonketotic hyperglycinemia” meant nothing to Tarah and Eric. But the next words were clear: Drake had a less than 10 percent chance of survival.
The diagnosis was like a starter’s pistol for the O’Sullivans. From that moment, everything would be a race against time to save Drake.
After 28 days of tests, monitors, tubes and wires, Drake was released to go home. There, as Tarah explains, “Our house became a sort of lab.” There were blood tests, feedings, medications and monitoring — day and night, 24/7. Glycine became the O’Sullivans’ obsession as they tried desperately through medication and diet to moderate Drake’s levels. They began to search for information, research, treatment, medical advice — anything to save his life.
The O’Sullivans contacted anyone who might know about NKH, have a related research project or could tell them more. They learned that NKH affects fewer than 500 people worldwide and has no cure. There was no research underway, and no funding for research. And because there is no medically recognized cure for NKH, all treatments are considered “experimental” and not covered by medical insurance. Period.
So Tarah became a lay scientist. She read everything, called and emailed medical researchers and established the Drake Rayden Foundation to “raise awareness for NKH, fight for better treatment and support research.” She entered a world of genetics and vectors, glycine and metabolic pathways. Tarah had quit college just shy of completing her business degree. Now she desperately needed the scientific expertise that would help her understand the disease and find the cure.
Tarah decided to return to college.