The race brings attention to something people don't want to talk about, said Pappert, 47, a former Pennsylvania attorney general. A child dies, he said, and parents want to focus on the cure. That's good. But sometimes the cure is hard to come by, as in George's case. That's what made the Papperts want to focus on the care.
In May 2008, four months after the funeral, the couple got a letter from the director of Keystone, whose nurses and therapists had seen George through to the end.
Gail Inderwies wanted the family to know that Keystone had established a fund, in the boy's name, for the care of terminally ill children.
Jerry Pappert was so moved, he visited Inderwies at the hospice. By telling people that the family welcomed donations to both brain tumor research at Children's Hospital of Philadelphia and the hospice, she said, Keystone had received $13,500.
"Out of all the children you've cared for, why name a fund after my son?" he asked.
"Because you are the only people who asked for contributions to be sent to us," she replied.
George was 31/2 back in July 2006 when he started throwing up first thing in the morning. Ellen Pappert drove him to their pediatrician, thinking it might be reflux.
Jerry Pappert was at work at the Ballard Spahr law firm when his wife called, saying they were headed to the hospital for an MRI. He flew out of the building and grabbed a cab.
They waited together as the boy was tested. Then, as they were shown to a room where the doctors would explain the results, they sensed something terrible.
"The first clue was that there was a chaplain or a social worker there," he said. "You're not prepared for what you're about to be told. We were thinking, 'This can't be happening to us. We'll start vacation down the Shore as planned.' "
The boy had a diffuse intrinsic pontine glioma - a form of malignant brain tumor that doesn't respond to surgery or chemotherapy.
Radiation could shrink the mass, buy some time. But not much. Life expectancy was measured in months, not years.
"We were told right there and then that George was going to die and there wasn't anything anybody anywhere could do about it," Jerry Pappert said.
George was the younger of two. His sister, Mary, was 6 at the time. "He was just an extremely bright and communicative child," Jerry Pappert said. "There was a gentleness to him that people noticed. He loved playing with his toy trucks. He liked baseball. He was just starting to play catch with me. He and his sister, Mary, would play happily for hours on end."
Radiation began immediately - 6:15 a.m. daily sessions that lasted three months. The treatment shrunk the tumor at first. But a year after his diagnosis, an MRI showed the tumor was growing again. The Papperts struggled with what to do next.
"We just made a decision, as wonderful as CHOP was, we didn't want to go back there anymore, for blood tests, or radiation, or anything," he said.
That fall, George was treated at home. Nurses monitored his symptoms, conferred with the doctors, took the pressure off the parents, even going to the pharmacy for them.
Art and movement therapists visited the boy in his room - he fell in love with his movement therapist, Ellen Pappert said. "In the end, George couldn't walk anymore. He lost coordination of his hands. So she was able to come up with ways to play with him with the limited bit of coordination he had and really could get him laughing and smiling and engaged in ways we didn't know how to."
The Papperts had excellent health insurance. They never saw a bill from Keystone. But they understand how the economics of hospice are especially tough on the parents of children. Inderwies says insurance typically pays only 30 percent of the costs of caring for a child.
That's the hole that the George Fund seeks to fill. To date, it has raised $340,000, and spent $85,000 of that on therapy and nursing care for 28 children. It has bought medical equipment that allowed two boys and a girl to spend their last days at home with family.
The fund, Jerry Pappert says, gives some purpose to George's short life.
"People ask, 'Why do you and Ellen do this to yourselves? Why deal with this every day and remind yourselves every day? Wouldn't it be easy to go on and do something else?' Yes, it would be a lot easier to forget about it. We're doing it because no one else is."
Contact Daniel Rubin at 215-854-5917 or firstname.lastname@example.org.
The George Fund's website is: www.keystonecare.com/pediatric/the-george-fund.aspx