Upstate baby battles rare disease - FOX Carolina 21

Upstate baby battles rare disease

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Upstate baby battles rare disease. (Courtesy: O'Sullivan family) Upstate baby battles rare disease. (Courtesy: O'Sullivan family)

Tarah and Eric O'Sullivan have two girls and two boys. Baby Drake is one and a half years old.

"It's always exciting when you find out because you know it's a new child and the kids always enjoy thinking about other siblings," Tarah O'Sullivan said.

Drake has had a tough year though, after his parents noticed something wrong when they brought him home from a hospital.

"We woke him to feed and he really just wasn't...we were having to jostle him to try and get him to swallow and Eric just said we need to take him in, this is not normal," Tarah O'Sullivan said.

They took him back to a hospital for tests, which showed he had seizures.

"That's kind of when things changed. It went from we're getting him checked out to he's going to have to be admitted," she said.

The O'Sullivans would become familiar with the name Nonketoctic Hyperglycinemia, also known as NKH.

"Once you see some of those words NKH- Nonketoctic Hyperglycinemia," Eric O'Sullivan said as he held Drake. "You can't even pronounce it, much less know what it is."

Nonketoctic Hyperglycinemia or Glycine Encephalopathy is a genetic disorder in which the body is not able to break down amino acids, which are proteins in the body.

"He was extremely, extremely tired," Eric O'Sullivan said.

There isn't a cure for the disease. To help oxygen get to Drake's brain, he's put into an oxygen chamber each day. He's also given extract from cinnamon sticks, which are ground and boiled.

"Sodium Benzoate is made in your liver and it is trial and error with Drake, but right now it's effectively being able to keep his levels low and we don't have to give him anything synthetic," Tarah O'Sullivan said.

The O'Sullivans say they're fighting for their son and for more research.

"It's something bigger than just us and just Drake- there's faith and there's hope." Tarah O'Sullivan said.

Eric O'Sullivan says they believe in God and have grown in their faith.

"You don't find your hope in things that are here, you find your hope form the Lord."

The O'Sullivan's also created a foundation called the Drake Rayden Foundation. For more information about NKH or if you would like to donate to help with expenses, click here.

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