Inside the Lives of Kids With Progeria

"The first thing I think about when I wake up in the morning is whether today is going to be the day I lose her," said her mother Kerry Okines. "The only way I cope is by saying to myself that Hayley's going to be the one to prove the doctors all wrong."

Hayley and her parents have been hopeful ever since she joined the progeria drug trial, which is testing a pill originally developed for cancer, which could reverse the dramatic instability in her cells. She believes she sees small signs the pill is working.

"I've got eyebrows and I've got eyelashes and I've got hair on my arms," she said.

Despite progeria, Hayley sees herself as a person not a disease and has all the interests of an average pre-teen, including fashion, photography and a crush on pop-star Justin Bieber.

Parents Hope Not to Outlive Children

The Okines, the Ratcliffes and the Halkos hope that the ongoing clinic trials and research will unlock the secrets to their daughters' medical mystery and the process of normal aging.

"The evidence is growing, that the same glitch these kids have that causes them to produce a protein that makes their cells unable to keep dividing, that same protein is being produced by all of us," said Collins. "It looks as if this maybe part of a program that prevents humans from being immortal."

Every year, the three families raise money for the progeria research, typically through walk-a-thons.

Kaylee is very aware of the high cost of research and participating in clinic trials. She told Walters that she hopes "that I have thousands of dollars to buy my medicines."

The families all say there is no preparing yourself for the probability that you will outlive your child.

"It scares me. Not much scares me, but that does. Even thinking about it [scares me], so I generally don't allow myself to go there," said Joe Ratcliffe, who tattooed the Progeria Research Foundation's logo of a child's handprint and dove on his arm as a symbol of hope. "That's what we fight for. Without awareness we have nothing."

CLICK HERE to watch "7 Going On 70: A Barbara Walters Special."

CLICK HERE for more information about progeria or to help Lindsay Ratcliffe, Kaylee Halko, and Hayley Okines.

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