Zoey Penny of Verona is only 10 months old, but already she’s got her own Web site, profiles in media outlets such as Fox News and The Star-Ledger, and a cadre of doctors at New York Presbyterian Hospital that includes an endocrinologist, cardiologist and audiologist. The reason: Zoey is one of only 16 children in the United States suffering from Progeria, an as-yet incurable disease that is causing her to age at a rate many times faster than normal, bringing her all the health problems of aging, such as arthritis and heart disease, way ahead of her time.
Zoey is one of the youngest children to have ever been diagnosed with the disease, and she is still too young for its main treatment, human growth hormone. Her parents are hopeful that several medications currently in clinical trials will be successful and that Zoey will qualify for a trial. The life expectancy for a child with Progeria is 13 years.
Yet the day-to-day goal of Zoey’s parents, Laura and Ian Penny, is to create a normal life for their young family, which also includes 4 1/2-year-old Aidan, 2 1/2-year-old Gavin, their dog Caley and three cats–and they seem to be succeeding.
“Aidan and Gavin don’t know about Zoey’s illness,” says Laura, referring to Progeria, whose early signs are a hard belly and tight skin. “When she has to go to the doctor I just tell the boys we’re going because Zoey’s skin is hard. And when the physical therapists come to the house, I tell the boys that, just as they go to nursery school, Zoey’s teachers come to the house to teach her, too.” (Therapy helps Zoey’s range of motion, which is somewhat limited due to the tightness of her skin.)
This summer the Penny family’s days are marked by a routine remarkably similar to that of any Verona family: Aidan attends Tot-Lot, and many afternoons, the family can be found camped out at the Verona Pool. Come August, Ian will be done teaching summer school and the Pennys will head to Laura’s grandparents’ shore house in Mantoloking. In the fall, Gavin will join big brother Aidan at Creative Beginnings Preschool and Ian will resume his duties as an English teacher at Union’s Burnett Middle School. The family, who lives on Halsted Street, receives constant support from their extended families in western New Jersey.
Members of the Verona community, including the Junior Women’s Club and the staff at Creative Beginnings, have also offered their help, Laura says. Though financially, things are “obviously tight,” for the Pennys, she says their appeal for funds is strictly for the Progeria Research Foundation, so it can fund the enormously expensive clinical trials necessary to find a cure. (Donations can be made to PRF through Zoey’s Web site.) In addition, there is a golf outing on September 23 at the Preakness Country Club in Wayne whose proceeds will go to the PRF.
“We really need to raise money for PRF,” says Laura. “They are the ones who are going to save Zoey’s life.”