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CHARLOTTE – The family of a 13-year-old girl battling a rare, deadly disease is making sure their voices are heard. Taylor King's family has made her disease their mission, one to promote and educate others about the disease.
 
"Oh Taylor, she is the most sparkly princess girl. Loves, loves, loves to sing, loves to dance. We still get her in the living room and dance a lot,” said Sharon King, Taylor's mother.
 
Six years ago, Taylor was diagnosed with Batten disease.
 
"We've watched her lose her vision, she is losing her verbal expression, it's more difficult for her to share her thoughts,” said King.
 
The rare, inherited, neurodegenerative disease slowly robs children of their functions and is always fatal.
 
"I will never live through anything more painful than this,” said King.
 
But that's exactly why the King family decided to speak out. They say just because it's rare, doesn't mean it has to continue. Five years ago this month, they started Taylor's Tale to promote education and funding for the disease.
 
"I think the more that we can tell the stories of children like Taylor, of families like ours, whether it be Batten Disease or any rare disease. I think children have a better chance,” said Laura Edwards, Taylor's sister.
 
Taylor continues to go to her school, The Fletcher School, in south Charlotte for part of the day. Friends of Taylor's who knew her prior to her body being ravaged by the disease wanted to help out Taylor's Tale, so they coordinated a fundraiser to help educate others about Batten disease.
 
"I think having Taylor here has been more of a blessing for us than it has been for Taylor. Any chance we can give students an opportunity to be compassionate and understanding and empathetic to another person is a lesson in and of itself,” said Suzi Stephens, division head of the middle and upper school at Fletcher.
 
Decked out in Taylor's favorite colors, they did her favorite thing, dance. The cardio craze fundraiser brought in more than $3,500.
 
"We had one students who came in and gave their $5, and then she had her 16th birthday, and she had gotten money for her 16th birthday, so she came in and added to that sum,” said Stephens.
 
Taylor's mom says it was one of her happiest days.
 
"It was as if they wrote the mission,” said King. “The kids have it, they did it."
 
Taylor attended the fundraiser at The Fletcher School last week. So far, Taylor's Tale has raised more than $300,000 over the past five years. To learn more about Taylor and Batten disease, visit www.taylorstale.com.