A Mysterious Disease Cost Joy Spering Her Legs, but She Bounced Back Up a Champ
Then Joy's complaints took on an urgent tone: her legs hurt, she kept repeating. "That wasn't like her, she's not a whiner," says her dad, Ken. On inspecting Joy's legs, her mom, Karen, found marks like a "strange, fine webbing—very, very faint—on her thighs." By the next morning the marks had turned into black-and-blue splotches. Now thoroughly alarmed, the Sperings rushed Joy to the local hospital, where, after blood tests, doctors advised them to drive her at once to the nationally renowned Children's Hospital of Philadelphia, about 40 minutes away.
There, the little girl, screaming in pain, was wheeled into intensive care. Soon, Dr. Mortimer Poncz, a pediatric hematologist, came to the family with the horrifying report. "By our calculations," Karen Spering recalls him saying, "Joy has 12 hours to live."
She had purpura fulminans, a deadly-disease so freakish that modern medicine still knows little about it. Essentially, it is an extremely rare blood disorder that can occur after infections such as scarlet fever or chicken pox, causing antibodies to act in bizarre ways. "What results," explains Poncz, "is an overwhelming disorder of the circulatory system that, paradoxically, causes clotting and bleeding at the same time." Statistics are scant, but doctors estimate the odds against an extreme case of purpura fulminans are about 5 million to one. Until recent advances in treatment techniques, says Dr. Ronald Ellis, a surgeon at Children's, mortality exceeded 90 percent.
Stunned though they were, Joy's parents refused to fall apart. "We didn't have time to sit in a corner and cry our eyes out," says Ken. With Joy's older sister, Tina, now 13, the Sperings vowed to make every moment that they had left with their dying child count. As it turned out, their constant vigil would continue for the next 52 days of her four-month hospital stay.
In that time Ken, 43, and Karen, 35, all but ignored the small businesses—two beauty salons and a dry-cleaning plant—that they had spent years building up. They could see Joy's medical costs soaring past $1 million, "but nobody at the hospital ever mentioned a penny," Ken says gratefully.
Joy's schoolmates raised more than $700; Dr. Kane led a committee that solicited $50,000. Ultimately Joy's condition officially qualified as a disaster case; what Medicaid didn't pick up, the doctors and the hospital absorbed.
"Everyone was so incredible," says Karen, no one more so than Joy herself. In the first days, though medication could not control her pain, she never lost consciousness. "She was crying, 'Mommy, help! Mommy, do something!' and this went on every minute of every hour," Karen remembers, "but Joy somehow never gave up."
"I had to fight to live," Joy says now with a wisdom beyond her years. And how she fought. "She was so tough she actually tried to direct the doctors and nurses about changing her dressings," says Poncz. "She didn't pull any punches. Once she squirted me with a water pistol," he adds, smiling, "but that's okay. I squirted her back later when she was in traction."
Through her hospital ordeal, Joy endured 40 operations, sometimes two in a single day. Mercifully the disease did not cripple her upper body, but when Dr. John M. Templeton Jr., assistant pediatrics surgeon, told her that her legs could not be saved, Joy admits, "I just felt terrible, but it wasn't my whole life I was losing."
She lost her right leg to midcalf and her left foot below the ankle. Still, her battle was not over. There were 106-degree fevers and complications, such as pneumonia. Most of all, there was the desperate struggle against massive infection, which prompted her doctors to try an unusual technique of using amnion (the innermost membrane of a placenta, contributed by the hospital's delivery room) as an antibacterial dressing for her skin. She came to be known around the hospital as "The Miracle Girl." "Over and over again," says Templeton, "she defied death."
Joy finally left the hospital in September in a wheelchair—"and I was bald," she giggles. The hair that fell out in her trauma grew back soon enough (at first, it was gray), but doctors doubted she would walk again for at least a year. To everyone's astonishment, she began getting about on her stump protectors. By November she got her artificial legs and walked out of the doctor's office without practice or crutches. In January she was cheerfully back in school. "What is extraordinary," says her teacher, Mae DeMoske, "is that Joy has absolutely no self-pity for what she's gone through."
Almost 9, Joy thinks that she may one day study medicine, "because I know what pain feels like, and I want to help others like my doctors helped me." For now, she is interested mainly in rock stars and sports. A year ago she joined an amputee ski group in Pennsylvania and took the slalom championship in her double-amputee class. Two weeks ago, she was back defending her title. Did she win again? Of course, but why would anyone need to ask?
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