Zoey Aster Penny is in almost every aspect a normal little girl. The 18 month old loves to eat, play with her two older brothers, and ham it up for the camera.
But Zoey, who lives in Verona with her parents, has the condition known as Progeria, a rare genetic disorder that causes children to age seven to 10 times faster than normal.
“Progeria signs include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, generalized atherosclerosis, cardiovascular (heart) disease and stroke,” reads the website of the Progeria Research Foundation or PRF, an organization whose aim is to find a cure for the fatal condition.
As of last December, there are 78 known children with the disease, victims of which typically do not live past the age of 13, according to PRF. The leading causes of death are heart disease and stroke.
A fundraising event in Zoey's honor to benefit PRF was held Wednesday night at the Rockn' Joe Coffeehouse and Bistro on Bloomfield Avenue in Caldwell. Over 40 people jammed into the coffee house to eat treats, down cups of joe, stuff donation boxes on the front counter, and meet Zoey and her family.
Zoey, who was a little shy from all the strangers, hid her smiling face at first on the shoulder of her mom, Laura Penny, or father Ian Penny. But Zoey opened up and ran around the room as she played with her brothers Aidan, 5, and Gavin, 3.
“She’s fast as she can be,” her mother said, laughing. “She’s really fun and playful.”
Life Source Church in Caldwell sponsored the event, which ran from 6 to 9 p.m., by providing free coffee and asking visitors to donate money to Team Zoey, a local group made up of Zoey’s family which raises money for PRF. The coffee house also will donate a portion of proceeds from the food purchased during the event.
“We want to be part of the solution,” said Jonathan Papa, the pastor of Life Source Church, about why he and his congregation became involved.
Edwin Medina, a Verona resident and member of the church, said he came up with the idea for the event after he read about Zoey and Progeria on the Internet.
“We felt we had to do something about it,” Medina said.
Laura Penny, Zoey’s mom, said she was touched by their efforts.
“It’s good to feel that sympathy,” she said. “It’s really sweet.”
According to Team Zoey’s fundraising website, they raised over $400,000 last year. This year’s goal is to get to $500,000, of which about $58,000 has already been raised, the website said.
“There is a tremendous need for more research into the cause and the cure of Progeria. And finding the cure will not only help Zoey, but will go a long way into solving the problems of adult heart disease, the leading cause of death in the general population, as well as discover some of the secrets of aging,” reads the Team Zoey website.
The next scheduled fundraising event, “Strike Down Progeria, “ is on May 12, Thursday from 5 to 7 p.m. at Hanover Lanes, a bowling alley, located at 119 Route 10 in East Hanover.
Registration for the event includes pizza, soda, and bowling shoes.
Team Zoey asks that each participating bowler pledge a minimum of $35 each or $180 per team of six bowlers.
All money donated will go to PRF.
For more information, go to teamzoey.com or progeriaresearch.org.