By Richard Khavkine
August 18, 2011
NEW BRUNSWICK — Joey Rogers dreamed of helping others, even as he struggled with his own illness. And he dreamed of butterflies.
The teenager wanted a place where sick kids and their parents could enjoy monarchs, painted ladies, red admirals and white peacocks.
Four years after his death at 22 of a rare blood disease, his dreams are taking flight.
His mother, Dolly Rogers, cut through red tape, enlisted donors of money, time and effort, and earlier this month helped christen the Cool Beans Butterfly Garden in a hospital courtyard in New Brunswick.
“All this is coming to fruition,” Rogers said. “I’m excited. I feel like a little girl … . It’s a miracle.”
Joey had Wiskott-Aldrich syndrome, which affects the immune system. The disease led to a bone-marrow transplant, drug therapy and frequent visits and stays at hospitals. But none of it compromised his radiance or exuberance, Rogers said.
Joey was active, and for a time cultivated a friendship with then-Gov. Christie Whitman. Out of the limelight, the pair attended New Jersey Devils hockey games and strolled the boardwalk at Point Pleasant.
Whitman visited on Joey’s 13th birthday, right after a bone-marrow transplant. A few months later, he danced with the governor at her 1998 inaugural ball. A year later, the teenager led the Pledge of Allegiance at her second inaugural address.
He called Whitman “the Guv;” she called Joey “my guy.”
It was Joey who would just as often do the comforting — particularly of parents of dying children whom he would meet and befriend during his hospital stays. To ease the parents’ pain, Joey would tell them their child would return to the world as butterflies.
Joey told his mother he wanted her to cultivate joy for those who otherwise might struggle to find it.
Rogers said Joey wanted a “whole, veritable smorgasbord” that he wanted to do.
Among them were Thanksgiving baskets she put together and gave to families of Marines lost in battle and donations to the Highland Park Volunteer Fire Department. Another of the highlights, Rogers said, was being able to take a couple of car-fulls of Newark kids to Six Flags Great Adventure during one of the park’s “Christian Days” last summer.
Although Rogers said she had to improvise on a few of what she called her son’s “bucket list,” the garden isn’t one of them. But Rogers had to work hard to see it take root, not least because of cost issues. A call earlier this year to Gino Panaro — a.k.a. the DIY television network’s King of Dirt — landed her a sympathetic and eager benefactor. Panaro and his crew knocked out the project earlier this month.
“It took me all of 30 seconds to figure out what I wanted to do,” Panaro said. “Metamorphosis, that’s basically what happens to the landscape. We make something unattractive, attractive.”
In an open-air area courtyard adjacent to PSE&G Children’s Specialized Hospital and the Bristol-Myers Squibb Children’s Hospital in New Brunswick — Joey was treated at both, which are affiliates of Robert Wood Johnson University Hospital — Panaro and crew rolled out a natural grass carpet and planted about 40 perennials and shrubs, transforming a modest stone courtyard into an oasis of greenery dotted with color.
Come the fall, monarchs migrating south will find themselves taking a respite in the Hub City, among flowers, bushes and shrubs Panaro, sometimes by happenstance, found are hospitable to eggs laid by buckeyes, checkerspots, tortoiseshells and other butterfly species.
“It’s going to be fun, in the right way,” Panaro said.
Joey’s disease, Wiskott-Aldrich, is so rare there are between just one and 10 cases per 1 million males worldwide, according to the National Institutes of Health. Most die before their second birthday. Joey, though, battled through. His doctors called him Mr. Phenomenon. Altogether, he would live two decades longer than most with Wiskott-Aldrich.
In a garden off New Brunswick’s French Street, Joey’s dreams are blooming.
“This is a wonderful thing,” Rogers said. “With everything going on in the world, it puts a smile on everybody’s face.”