-- A teen who brought awareness and hope to those suffering from a rare genetic disease that causes premature aging has died. She was 17.
Hayley Okines, of Bexhill, England, managed to survive four years longer than doctors predicted after she was diagnosed as an infant with the genetic disorder Hutchinson-Gilford syndrome, more commonly known as progeria.
Audrey Gordon, executive director for the Progeria Research Foundation, said Hayley had helped educate millions about the rare disease.
"She was a pioneer -- one of the first participants in the clinical drug trials and other research that initiated our progress toward treatments and cure -- and one of the reasons that we now have the first treatment for Progeria," said Gordon. "It took tremendous courage and determination by Hayley, her family and others like them to bring us to this point of progress, and we join her family and millions of people around the world in mourning her passing."
Hayley had helped raise awareness about her rare disease by posting about her progeria online and co-writing two books about growing up with the disorder, the first published when she was 13.