Reidsville Boy Born With Rare Disease Meets With Doctors, Researchers

11:03 PM, Aug 6, 2012   |    comments
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Reidsville, NC -- It's a race against the clock for a Reidsville family that's gotten some signs of hope.

Little Caleb Paynter has Cockayne Syndrome, Type II, which is the most severe.

The 2-year-old can't walk, can't eat on his own, and says very little.

Caleb wears hearing aids and contact lenses. Doctors said he'll likely only live until he's five years old.

But last week, after a trip to California, Caleb's family was given some hope.

"The doctors know the sensitive time span that you have," said Jennifer Paynter, Caleb's mom.

For the Paynter family, their search for answers has been slow-going.

"You feel like you're in it alone. You feel like you've got to explain it to even the doctors that you need, to help your children, to help your child," said Paynter.

But in California, they met with doctors who treat kids with Cockayne Syndrome, researchers who are looking for a way to save them, and families who are facing the same uphill battle.

"That's sort of bittersweet, but you sort of bear each other's burden and know that we're there for each other, to help each other in any way we can," said Paynter. "You sort of just got a touch of what the future could hold for any CS child."

The Paynter family met with four different doctors, who want to help Caleb walk.

"He wants to get out there and go. So, we want to try to enable him in any way to be able to do it on his own," Paynter said.

Doctors recommended ultrasounds on Caleb's hips to see if surgery could help him walk and sit up straight. They also recommended that the Paynter family get him a custom-walker, so he can get around better on his own.

Researchers told the Paynters and other families who have kids with Cockayne Syndrome that they have found medicines that might help.

"Some of the kids have tremors and they have found that some of the medicines for Parkinson's Disease actually help the CS kids and calms the tremors," said Paynter.

The researchers also watched Caleb in action, to help them better understand his syndrome, so they can find a way to save him.

"What they're working on now may be 10 years down the road before it would be able to be used on Caleb. And we would pray that he would be here, but history doesn't tell us he will be," she said.

"Little pieces of information like that were just like little golden nuggets, to help us to say, you're on the right path or veer this way a little bit or veer that way a little bit," Paynter said. "It ain't the miracle that we're looking for, but it is a step in the right direction."

There's a wrestling match fundraiser for Caleb on Saturday, August 11 at 7:30pm at the Wentworth National Guard Armory. Doors open at 7:00pm. Front row seats are $8, general admission is $5 and kids 5 and under are free.

WFMY News 2

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