WSET.com - ABC13Parents of Girl Living With Rare Disease Raise Awareness

Parents of Girl Living With Rare Disease Raise Awareness

Reporter: Jeremy Mills | Videographer: Melinda Zosh

Campbell Co., VA - A 2-year-old girl is living with a medical mystery that affects less than 60 people in the entire world, and now her parents are leading the fight to find out more about her disease.

It's is called Cloves Syndrome, and it's believed to be caused from a genetic mutation.

Experts say there's no cure for it, but that hasn't diminished the parents' hope for their little girl's future.

Emaleigh Blankenship was born with the rare genetic syndrome and has grown up a happy little girl who's never stopped dancing.

Her condition is an overgrowth disorder causing soft-tissue tumors and growing the bones in her feet to the size of an 8 year old. She just had all of her toes removed.

"I don't know how you could justify the things she's had to go through at the age of two, so I guess that's a good way to put it, the deck is stacked against her," said Chris Blankenship, her father.

The Blankenship family, with Emaleigh's twin brother Michael, just learned she's also suffering from a form of kidney cancer and needs chemotherapy.

"I just want her to have a better future," said Adrienne Blankenship, the mother.

To make that happen, they started the Cloves Syndrome Foundation dedicated to finding a cure and creating awareness.

"We don't want people to just have to sit back and not know what's going on and not be able to do anything to help themselves," said Chris Blankenship.

"We want to let people know that this syndrome is out here and it could be your neighbor's kid, it could be your kid. I had no idea," said Adrienne Blankenship.

But because the disease is so unknown, they are having trouble getting donations.

"Nobody wants to say, ‘Okay well, let's throw all this money into 60 people,'" said Adrienne Blankenship.

The family will continue making monthly trips to Cincinnati Children's Hospital for treatment and leading the way for others affected by this disease.

"You have to do what you can for your kids and this is what we can do," said Chris Blankenship.

If you're interested in learning more or donating, go on the Cloves Syndrome Foundation website.