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In May 1983, Denise Leary's 18-month-old daughter, Hillary, was ill. She was running a high fever and vomiting. Leary had seen her two older children sick before, so on that first night in their New York apartment, there wasn't much cause for concern. Her pediatrician told her to rotate doses of Tylenol and aspirin and give the girl cool baths. If she wasn't better by morning, Leary should bring her in.
The next day, nothing changed. Leary went back to the pediatrician, but Hillary's fever still didn't drop, and the child seemed sicker. By the third day, Leary says, she was frantic.
She took Hillary to the emergency room at Lennox Hospital the next day, where a young resident dismissed the days of fever and advised more doses of Tylenol.
"That's when I remember I said, 'How do you know this won't come back to haunt us?'" says Leary, now 58. Later, Hillary's parents would realize their misgivings had, indeed, come back to haunt them.
A family odyssey
Hillary's father, writer and historian James Reston Jr., chronicles his family's search for answers over more than two decades in a book published in February, Fragile Innocence: A Father's Memoir of His Daughter's Courageous Journey.
Hillary's illness brought her development to a standstill and left her with seizures, kidney failure and an inability to speak. She's now 24, but kidney failure stunted her growth to that of a 10-year-old and her brain functions to the level of a 2-year-old, Reston's book says.
In the months since the book arrived in stores, Reston, 65, says, he has received hundreds of e-mails and letters from people who have had similar ordeals.
"In my readings there have been really amazing people saying, 'How did you deal with this or cope with that?'" he says. "It's suddenly OK to talk about anger and isolation and the joy of caring for a handicapped child."
Even as he was going through it, Reston says, he knew that at some point he would write about what his family has been through. "I thought it was important," he says. "We had nothing to read during our various crises along the way."
Those crises started in the months after their daughter's five-day illness. Hillary's vocabulary started to diminish, and Reston says she began to exhibit strange behavior, such as walking off picnic tables. Then, in September that year, Hillary had a seizure while the family was eating breakfast.
Her condition worsened, and despite visits with doctors across the country, Leary and Reston never got a diagnosis that explained what happened to their daughter.
"The hardest part is not knowing," says Joan Conry, a doctor at the Children's National Medical Center in Washington, D.C., who treated Hillary for 16 years. "There's not anytime (the family) can look forward to it being fixed or cured." Conry says Hillary's condition is unusual because her seizures were not easily controlled and her kidneys failed.
Hillary had a brush with death in 1986 when her lungs failed; seven years later, so did her kidneys. Her nickname is "the unsinkable Molly Brown," Reston says, after the legendary woman who survived the Titanic. "She's one tough cookie."
In July 2002, after eight years on a transplant waiting list, Hillary received a kidney in Iowa City from 18-year-old Jared Gassmann, who died after losing control of an all-terrain vehicle.
Reston and Leary recently met Jared's family for the first time when Reston was in Iowa for a book reading.
"It was an extremely emotional meeting in which we talked about this wonderful young man," Reston says.
As though intuitively, Reston says, Hillary sat next to the boy's mother and held her hand.
Hoping for awareness
Reston and Leary hope their daughter's story will make people aware of the need for transplants and organ donations.
It's possible that Hillary might need another kidney transplant, but Leary, a corporate lawyer, says she tries to focus on giving Hillary a good life, with music therapy and swimming lessons in the summer.
Reston gets up from his seat next to Hillary at the dining room table and walks upstairs in the family's home in Chevy Chase, Md. A minute later he comes back carrying a picture of Jared Gassmann, a good looking and fresh-faced kid kneeling on one knee and dressed in a red-and-white football jersey. Jared's parents gave the photo to Leary and Reston.
"We're going to frame it and hang it in Hillary's room," Reston says.
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