Caleb Paynter Diagnosed With Type II Cockayne Syndrome

7:44 AM, Jun 27, 2012   |    comments
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  • Courtesy Paynter Family
  • Courtesy Paynter Family
  • Courtesy Paynter Family
    

Reidsville, NC -- He's 2 years old, and he needs your help.

Meet Caleb Paynter. This little boy has a syndrome that's so rare, there are only 60 known cases in the world.

Its called Cockayne Syndrome.

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

When Caleb was born, he didn't pass his hearing test.  A few weeks later, doctors realized something was wrong with Caleb's eyes.

"We just thought, 'we're dealing with something with his eyes. We're dealing with something with his ears.' But really, never put the two and two together," said Jennifer Paynter.

Doctors sent Caleb for genetic testing.  And at a year and half, he was diagnosed with Cockayne Syndrome (Type II), which is a genetic disorder.

The life expectancy for kids diagnosed with the syndrome is around five to seven years.

Doctors said Caleb wouldn't speak, and he would never stand, but the Reidsville toddler has done both. 

Caleb's small head, pointed nose and sunken eyes are all symptoms.  Also, he ages faster both inside and out.

Caleb wears hearing aids, contact lenses, and he has to eat through a feeding tube. He's also sensitive to sunlight.

"We're really believing for miracles. We're believing that God's going to pull him through," said Jennifer Paynter.

Caleb's parents said their little boy has already taught them so much in his short life.

"He shows unconditional love. And, that's something we all need to know," said Jennifer Paynter.

"Every minute is precious with him. Whatever the outcome may be, you just have to treasure each moment," said Brandon Paynter.

There's no medicine for Caleb or anyone with Cockayne Syndrome, so doctors just try to treat the symptoms.

Caleb and his family are going to California at the end of July to meet with doctors and researchers.  They're trying to learn more about Cockayne Syndrome, so they can figure out how to help kids like Caleb.

The Paynter family needs help to get there.  They're hosting a carwash, yard sale and bake sale this Saturday at Newbridge Bank on Freeway Drive in Reidsville.

The fundraiser is from 7am until noon.  All the money they raise with help pay for plane tickets and travel expenses.

You can also follow Caleb's progress on his Facebook page. 

FRIEND: Caleb's Squad On Facebook 

If you are unable to go to the fundraiser, you can also contact the Paynters and send donations to the address below:

Email: mr.testimony@ymail.com
Mail: P.O. Box 1581 Reidsville, NC 27323

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