Ever since they were born, Erin Holcomb and her brother Brian have been engaged in a fight to see, their world shielded by dark sunglasses due to a rare sight disorder which doctors warned could eventually blind them.
The Holcomb children suffer from congenital hereditary endothelial dystrophy, or CHED. It affects just one out of every 100,000 people and causes the cornea, the clear membrane covering the eyeball, to swell, leaving the world out of focus.
The children's parents, Ann and Jeff, were desperate.
"It was my biggest fear," says Ann. "What kind of future does life hold for them?"
Erin saw her parents as mere shadows and words printed in books were a blur.
"I thought what I saw was what everyone else saw but I was wrong," Erin, 14, says.
Refusing to accept a sentence of blindness, the Holcombs consulted eight different doctors before finding one man with a hopeful vision, Dr. Mark Speaker, a Manhattan corneal and refractive surgeon.
Speaker scored success with Erin's brother Brian; he now sees clearly after two corneal transplants.
But Erin's case proved troubling: she had three failed surgeries and was growing discouraged.
"Everyone said it would work and it didn't," she says. "You get a little upset by that."
Speaker performed the delicate corneal transplant operation on Erin using the cornea of a 7-year-old girl who died of heart failure.
First, Speaker trimmed the cornea to the exact size Erin needed, before carefully removing Erin's diseased cornea and replacing it with the healthy one.
Erin's parents were tense about the procedure: Only 1,200 corneal transplants are performed annually on children and no success rate is guaranteed.
"Kids are much more likely to reject them because of their very active immune system," Speaker explains.
Five days after her latest surgery to her right eye, Erin saw bright colors, which is a signal that rejection is not taking place.
Erin is hoping for a repeat performance of the successful surgery she had on her left eye when she was age 9.
"That was the first night that I saw the stars," she says. "It was amazing."
Erin will not know for about 3 months if her body accepts or rejects the new cornea.
Her mother, Ann, says every time she hugs her kids, she's sending out love to all those who've given part of themselves so her children can see.
Erin and Brian's parents' advice to other parents with sick children is to not give up.
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