Butte Falls child is the 1st documented case of rare disorder in Oregon

Despite spending so much time in a hospital, being prodded and poked at, he always has a smile on his face, in Butte Falls, Oregon, Thursday, June 30th, 2016. (KTVL/Ariana Rakhshani).

BUTTE FALLS, Ore.-- A Butte Falls child is the first documented case of a rare neurological disorder in the state. It is called Pantothenate Kinase-Associated Neurodegeneration, and is known as PKAN. It involves the buildup of iron in his brain, which causes miscommunication between it and his muscles. The chances of getting it are one in a million.

Blair and Courtney Anderson said initially, their son, Carter, was diagnosed with Cerebral Palsy. Once Carter started regressing, they took him to a hospital in Portland. That's when they found out he had PKAN.

"Our normal is feeding him, he's unable to feed himself," Blair said. "We bathe him, he's unable to dress himself."

Blair and Courtney said despite the challenges, they try to make every day his best day. But of course, it can be challenging--especially when they talk to other parents.

"They say, 'oh, my child is driving me crazy,' and I say, 'well, relish that, because we don't have him running up to us and telling us about his day, or helping me make Christmas cookies at Christmas time,'" Courtney said.

The couple said they love their son, their miracle baby. They said they had trouble getting pregnant, and on their fourth wedding anniversary, their miracle baby was born.

"He is our lottery, he is our miracle," Courtney said.

Now, they hope Carter can be a part of a bigger miracle.

"I truly believe we are one of the main links to the cure," Blair said. "We're going to presevere, and Carter will become successful."

The family said they would not be where they are without the support of their community and family. If you would like to donate and help Carter, click here.

Because it is such a rare disorder, there is not much known about it. If you are interested in donating to the cure, click here.

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