Running for Taylor: Woman to honor sister struggling with rare disease

Running for Taylor: Woman to honor sister struggling with rare disease

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by ANN SHERIDAN / NBC Charlotte

Bio | Email | Follow: @SheridanWCNC

WCNC.com

Posted on November 12, 2013 at 7:49 AM

Updated Tuesday, Nov 12 at 8:26 AM

CHARLOTTE, N.C.-- She looks like any little girl, dancing like all children love to do. But Taylor King is no longer dancing. She can't sing anymore either.

"The world came crashing down on me the day she was diagnosed,” said King’s 31-year-old sister Laura King Edwards.

Taylor King has a rare genetic disease called batten disease. Her family showed NBC Charlotte family pictures where King’s health is obviously deteriorating.  

Batten is a rare neurological disease. There is no good treatment, no cure. The disease is fatal.

You can see the effect Batten has already had on the now 15-year-old King.

The once healthy looking little girl now looks clearly different. She is losing her sight and is  learning Braille in order to read. 

"It's torture watching your child decline and suffer through an illness like this,” said mom Sharon King. "She'll struggle to talk to us. She tries hard to get the words out but she can't.”

Sharon King  and Laura Edwards want to raise awareness about Batten Disease and other rare illnesses, those diseases that don't get funding and  don't get press.

They want everyone to be aware that one in 10 Americans suffers from a rare illness. But the women struggled with an idea that would get attention, until sister Laura King came up with a plan. 

She will run the Thunder Road Half Marathon in Charlotte on November 16th. And in honor of her sister who is going blind, she will run blindfolded.

"I feel like fighting Batten Disease is the race of my life.  When I take off that blindfold at the finish line I hope to bring light to children with Batten Disease,” said Laura Edwards.

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