At just 5 months of age, Zoey was diagnosed with Progeria, an extremely rare disease that causes rapid aging at about 7 to 10 times the normal rate in young children. Of the 65 known cases in the world, Zoey is believed to be the youngest person ever diagnosed with the disease.
When she was born, Zoey appeared to be a typical happy, healthy baby, but after only two months she failed to gain weight and her pediatrician noticed, “her legs were hard and her belly was swollen,” according to her mother Laura Penny. Penny, and her husband, Ian, immediately rushed Zoey to the ER, and there they began a battery of tests.
“They were testing her for so many things I didn’t even know what they were testing for,” said Penny, a Verona resident. But the tests kept coming back negative.
Zoey’s skin was the clue that gave her pediatrician and geneticist the idea of testing for Progeria. “What was happening to her skin was so odd,” said Penny. “What kind of condition could lead to that kind of skin?”
Zoey had taut skin that appeared aged. “At first she couldn’t straighten her legs,” said Penny. “Her movement was very limited because her skin was so tight, and her hips were very tight.”
Soon other characteristics of the disease emerged. Growth failure, stiffness of joints, loss of body fat and hair, skeletal defects and hip dislocation are all effects of the condition as well as distinctive facial features such as prominent eyes and veins across the forehead and skull. Then in March, Penny received the call from Dr. Wendy Chung, the geneticist she was seeing at Columbia University.
Penny’s husband had already left for work as a middle school teacher in Union. She was alone when Dr. Chung imparted the news, news that left Penny blindsided. “I kept saying, ‘I can’t believe its true. It must be wrong. Can’t [the result] mean something else?’”
But the test was specific for a certain genetic mutation. Zoey had it.
At that time, Penny didn’t know much about the disease. She didn’t know that children with the disease live to an average age of 13. She didn’t know the life expectancy for these children ranged from 8 to 21 years or that heart disease is almost exclusively the cause of death for people with Progeria.
“It was devastating but also hopeful,” Penny said of her investigation of the disease. She came across more and more medical research being conducted on the disease and drugs in trials for possible treatment. “There is more of a hope for her than a lot of other kids had.”
Penny notes treatments will be available to Zoey sooner than they had been to kids who had been diagnosed in earlier years. In fact, Zoey is already scheduled to receive a human growth hormone to help stave off the effects of the disease. “She will be one of the first to receive the growth hormone. And while we are holding [Progeria] off, there will be even better drugs. That’s our hope.”
With that hope, they are taking action. They have started Team Zoey to raise funds and awareness of the disease. You can join the team this Saturday at Nailz, Hand & Foot Spa in Bloomfield, where you can receive a manicure and/or pedicure with the proceeds going entirely to the Progeria Research Foundation. The event runs from 8 am to 8 pm with the Spa generously offering a free paraffin hand treatment as a way of saying thank you to supporters of the cause.
Then on Thursday, September 23 swing some clubs for the cure at the First Annual Team Zoey Golf Outing at the Preakness Hills Country Club in Wayne. All the proceeds from this event will also be donated to the Progeria Research Foundation to fund research in developing treatments and finding a cure. For more information or to sign up for this event <a href=”mailto:”>email the Team or call 973-882-0202 x127.
The Pennys are undeniably determined in their quest for the cure. “We are going to do everything we can as early as we can do it.”
And, tonight Barbara Walters is doing an ABC News special on Progeria. See a segment here and tune in tonight to learn more.