Baby with rare skin disease defies doctors' predictions

The doctors told Tamara Milby her newborn would not live beyond a year, and in that short span, she would neither walk nor talk.

Little Paige emerged from the womb with skin the color of a boiled lobster. There was a thick, white build-up of skin covering her nose and upper lip.

The 21-year-old mother had no idea what was wrong with her child, and the medical staff delivering her baby didn't either.

Paige was rushed to a children's hospital in Louisville, Ky., where physicians diagnosed her with lamellar ichthyosis, a rare genetic disorder that causes her skin to form scales and peel in alarming amounts.

There is no cure, the doctors said.

"They said she wouldn't walk, she wouldn't talk and she wouldn't live past a year," the mother told Wednesday.

She is now 15 months old.

"She's walking and talking and running and getting into everything you can imagine," Milby said.

Paige defied the doctor's predictions because her mother and grandmother refused to believe them.

"Me and mom decided that's just not going to happen," said Tamara. "We said, 'Maybe if we did physical therapy with her, and moved her arms and legs and flexed her muscles and kept her moisturized as much as possible, maybe it will help."

Apparently it has, but it has not been easy.

At 12 days old, Paige had to undergo surgery to sew her eyes shut. She had no eyelids, which meant her eyes were unprotected and had no moisture.

She still needs eye drops every two to four hours, but her vision appears to be fine, her mother said.

Paige cannot hear because her skin peels off inside her ears and piles up. She undergoes surgery every six months to remove the dead tissue.

The baby is bathed twice a day to wash off her shedding skin and she is slathered in Vaseline and lotions.

Tamara says she doesn't take her child out in public because people have been known to stare and say horrible things.

"My mom took her to Walmart once and a woman made some comments that momma didn't like. She accused us of burning her. It was pretty bad. My mom just left."

Paige is perfectly normal in the eyes of her mother and grandmother. Tamara is considering home-schooling her daughter, "so she won't be made fun of."

"It's a hard road" her mother said. "It's been real hard road."

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