Girl diagnosed with rare disease has spark for life as she waits for a cure

A little girl from Verona may suffer from a rare, genetic disease that causes rapid aging, but it isn't affecting her ability to smile and

Zoey Penny, 4, has been diagnosed with progeria, a disease so rare that only about 250 people worldwide are believed to have it.

Zoey Penny, 4, has been diagnosed with progeria, a disease so rare that only about 250 people worldwide are believed to have it. (11/29/13)

VERONA - A little girl from Verona may suffer from a rare, genetic disease that causes rapid aging, but it isn't affecting her ability to smile and enjoy life.

Zoey Penny, 4, has been diagnosed with progeria, a disease so rare that only about 250 people worldwide are believed to have it.

Mornings at the Penny household look a lot like the regular routine for most families, but for Zoey, they often include sessions with her physical therapist, Miss Trudy.

Her mom, Laura Penny, says doctors were stumped at first by the puckering of the skin on Zoey's legs at her 2-month checkup.

"I had never even heard of progeria, I never even considered that it would be that," Laura Penny says. "We got the diagnosis and I think the first thing either our pediatrician or our geneticist said, ‘Don't go online yet and look, because you'll be too shocked.'"

Progeria causes accelerated aging, and eventually heart disease, in children.

The Pennys connected with the Progeria Research Foundation, started by parents, both doctors, who dedicated their lives to the fight against progeria after their son Sam was diagnosed.

The recent HBO movie “Life According to Sam” chronicles the foundation's development of the first ever treatment for the disease. Zoey is briefly featured in the film.

After waiting three years, Zoey is now taking the combination of drugs that has already shown promise in other children with progeria. Still, the diagnosis is grim. The average life expectancy for someone with the disease right now is just 13, something Penny says she avoids thinking about.

"If my brain started to go there, I would just stop it. It's not some place I would want to go," Penny says.

The family chooses to instead focus on the positive. "You do what you gotta do. We give her her medicine, she does her physical therapy, you do what you gotta do and you enjoy what there is to enjoy," Penny says.

Penny hopes that the medications will give them more time with Zoey, and that maybe with that extra time, researchers could find additional treatments or even a cure.

More on this topic

Everyday Heroes: Progeria

Team Zoey Progeria Research Foundation

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