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BROWNSBURG, Ind. — At just 6 years old Eva Ralph has some tough days and so do her parents. In 2012, Eva was diagnosed with Koolen-de Vries syndrome. It’s a rare genetic condition that causes developmental delay, learning disabilities and in some cases seizures.

“She’s six, she has the intelligence or development level of about a three year old,” mom, Laura Ralph said.

Eva is just one child giving a face to the disease.

The U.S. National Library of Medicine estimates one in 16,000 people will be diagnosed with the disorder, usually as a child. And for parents like Laura, hearing that first diagnosis can be devastating.

“You have ups and downs, you don’t know where the road ends,” Laura said.

But she turned that shock into action. Laura started a blog to help other families get a better understanding of the disease. And now that blog has turned into a full blown organization recognized across the country

“It is able to educate others about KDVS it’s to show awareness and it’s to assist in research.”

February 28 is Rare Disease Day. To learn more about this disease and others being supported by the cause click here