Just three days after Eric and Tarah O’Sullivan of Greer came home with their fourth child, a 7-pound 2-ounce healthy blue-eyed boy, they noticed something was not right.
“Drake became very lethargic and would not respond to feeding,” his mother said.
It was a Sunday night in October 2016, she recalled, three days after his birth Oct. 13, and he could barely breathe.
Mom and dad took him to the emergency department at Spartanburg Medical Center, where Drake underwent a series of tests.
He was dehydrated, had a low body temperature, and an elevated carbon dioxide level in his blood.
Unsure of his problem, doctors had him transported by ambulance to Greenville Memorial Hospital, where he was admitted in the pediatric intensive care ward, underwent more tests and was started on antibiotics.
“After all that he wasn’t responding,” Tarah said. “It took three weeks for him to breathe on his own.
He spent the next 28 days there before the parents learned it was not a viral or bacteriological problem. It was genetic. Drake’s body did not make the enzyme needed to break down glycine, a basic amino acid that accumulated in extremely high levels in his blood and spinal fluid.
The excess glycine caused several and uncontrollable seizures.
After more tests, it was determined that Drake had NonKetotic Hyperglycinemia (NKH) — or Glycine Encephalopathy, a metabolic disease that affects just one in 76,000 children with most not making it to their fifth birthday.
“There’s only one other child in South Carolina and 500 in the world who have it,” Tarah said.
After finding a neurologist at Chicago’s Rush University Medical Center who was familiar with NKH, Drake began getting treatments with sodium benzoate — a food preservative that helps break down the glycine so it can be flushed from his body.
Six months ago, they began feeding Drake ground down cinnamon sticks from Sri Lanka rich with benzoate, which helped him to have at least some normal days breathing and getting acquainted with his brother and sisters ranging in age from 3 to 7.
The disease affects his muscles, which control breathing and other functions like walking and holding items.
They have a room at their Greer home with breathing and exercise equipment to Drake can learn new activities, one at a time.
Eric is a Boiling Springs native and a financial planner at New York Life in Greenville. Tarah is a Spartanburg native and a stay-at-home mom.
Last August Tarah and Eric started the Drake Rayden Foundation to help raise funds for the numerous tests and treatments.
There have been fundraisers, many organized through their church, Anderson Mill Road Baptist.
Their goal is to find a cure for Drake and others who suffer from NKH.
They also hope Drake, now 1½ years old, can live well beyond his brief life expectancy and someday be cured.
In the meantime, they pray and continue to talk with doctors around the world who are trying to find a cure.
“We have watched God bring him through so much, and there is too much to praise Him for to stay focused on the downside,” Tarahaid. “We know Drake is delayed, but we have also watch the strength and determination to live, in his little body, that surpasses all understanding. We want it to be a story of hope.”
The foundation’s website is drakeraydenfoundation.com