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PIEDMONT, Okla. (KOCO) — Most 8-month-olds are learning to crawl, sit without support, and starting to battle.
But Huckson Parsons is having to fight another battle – a rare genetic disorder known as ornithine transcarbamylase deficiency.
“He’s a happy little fighter,” his father, Cade, said.
Huck, as his family calls him, is as happy as they come.
“He’s the happiest baby you probably would ever meet in your life,” his mother, Abby, said.
Past the happy demeanor, though, Huck is fighting a battle with OTC deficiency.
“It’s a genetic condition that is, like, it affects the urea cycle and his body’s way of moving toxic ammonia out of his body,” Abby said.
That condition means Huck and his family have spent a majority of his life in hospital rooms, doctors’ offices, and treatment centers. While doctors have worked hard to get Huck to where he is, his diagnosis will need a big operation that has left his family in a tight spot.
“It requires a liver transplant,” Abby said.
“They told us last week at the evaluation that when we get the call, we have four hours to get there,” Cade added.
The Parsons must get to Houston. And even if they do make it, it doesn’t guarantee the transplant will happen.
“They can decide that they don’t want the liver that was selected, and then we have to find a way back home,” Cade said.
If the transplant is a success, it’s a 30-day stay in Houston. With two other children 6 and younger, it won’t be easy.
“We have two other kids that would be down there with us. So, let’s try to figure out ways to make that work,” Cade said. “And my job has FMLA, but that’s unpaid. So, I don’t know how I’m going to work that out yet.”
With medications, special formulas, and a looming trip to Houston, the Parsons began fundraising and providing updates on their Facebook page where more than 100,000 people have come together to support them. They said this level of support means the world to them.
A GoFundMe page has also been set up to help.
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