In Moorestown, running in memory of a little boy

With three weeks to go before Moorestown's second annual Sean Fischel 5K Run, Kim Fischel stepped to a bookshelf in her home and took down a glass-sided box.

Inside was a pair of small, gray-and-orange running shoes. Even empty, they suggested energy and play, as though waiting for a little boy to fill them.

"Sean learned to tie his shoes on these," Fischel said as three of her friends leaned forward in their chairs to study this memento of Sean, who died last year at 7.

The room fell silent.

"I can still see him looking in my window," said Robin Rothman, whose house is across from the Fischels' on Iron Post Road. "He would stand on his toes to peek in. I kept his nose print there for the longest time."

Sean's emotional imprint on Moorestown promises to endure a long time, too - as the many lawn signs announcing the Oct. 12 fund-raiser run attest.

More than 1,000 runners turned out for last year's run, leaving the Fischels "blown away," said his mother. The event at Moorestown High School, which last year netted $48,000 for children's charities, includes a one-mile fun run for children.

Blond with hazel-green eyes, Sean has also been memorialized in a large mural in the children's section of the town's new public library, where he sits under a multicolored tree holding a favorite book and gazing into the distance.

Two years ago last week, he woke up feeling uncharacteristically lethargic, but he dressed and headed off to first grade at Baker Elementary School. Hours later, a school nurse called to say he was running a fever.

His mother took him home for what seemed a routine sick day. Three days later, his temperature was 105 degrees, and his fingers and feet were turning purple.

In septic shock, with almost no blood pressure, he was flown to Children's Hospital of Philadelphia, where he had two heart attacks before doctors determined he had a rare and painful autoimmune disorder known as HLH, or hemophagocytic lymphohistiocytosis.

A rare and often fatal disease, HLH usually strikes children.

"It's such a hard memory to think of. He was in so much pain," Fischel, 40, said. "His little body was just shutting down."

What followed was 100 days of raised and dashed hopes, emergency surgeries, intubations, amputations, chemotherapies, life support, and round-the-clock hand-holding at Sean's bedside as his parents and brother, Connor, and sister, Sydney, saw him slip away.

But to the Fischels' great surprise, they also found themselves awash in a network of emotional support from and newly forming friendships with hundreds of Moorestown residents they scarcely knew.

"I was inundated with phone calls and texts," Fischel exclaimed last week. "And the food! "Every single night, people brought us dinner."

Her friend Michelle Banfe nodded at the memory. "When I sent an e-mail [to the support group] to say I'd make a dinner, I was told I had to wait two months," she recalled. "Everybody had signed up. It made me grateful to live here."

Tracy Ferguson, whose daughter was a classmate of Sean's, agreed. "Everyone in Baker School wanted to know how to help. We were on the edge of our seats for the whole hundred days."

No one's anguish could compare, however, to that of Fischel and her husband, Brian, a vice president at Campbell Soup Co. One or the other was at Sean's bedside - later a heart-lung machine - throughout.

"It was almost too long, and almost too short," Kim Fischel said. "It was long as we were going through it, and then, what a short time with him."

"Seannie only cried three times" throughout his ordeal, she said. His last tears came two days before he died. "He said, 'Mommy, I just want to go home.'

"I could tell from the pallor of his skin he was slipping away," she said, "and that 'home' meant 'heaven.' "

He died on Jan. 6, 2013.

More than 500 people turned out for the memorial service at Our Lady of Good Counsel church, and 600 for the reception at the Moorestown Community Center.

"She hugged every single person," Rothman said, and Fischel laughed again.

"I had to," she said. "I was absorbing all the love. It was my food."

Before Sean's illness, "I was happy in my bubble. I didn't feel I had to rely on anybody. Sean's gift to me is that I learned to rely on other people to get through. I have grown."

More outpourings of affection and support followed Sean's death.

In May 2013, the family received an unexpected check for $10,000 from the Brendan J. Rush Golf Outing in Phoenixville, which raises money for childhood diseases.

Then the Riverton Country Club, to which the Fischels belong, held a benefit swimathon in Sean's memory and invited members to make donations along with their meal tabs, raising $20,000.

Sean's former wrestling team, Grapevine Wrestling, held a special tournament in his memory that raised $20,000 more.

All the donated money from those events went to an HLH research program at Children's Hospital, Fischel said Thursday. Earlier that day, she said, she had presented a check for $10,000 to Children's from last year's 5K and fun run event.

Other money disbursed from the 2013 run, she said, included $8,000 to the Moorestown Parks and Recreation Department for this year's youth soccer program, $12,000 to the Moorestown Library for the "Sean Fischel Book Nook" in the children's section, and $5,000 to Moorestown High School for improvements to its cross-country course.

Registration for this year's 5K run and fun run is "a bit behind last year's," she said, but organizers have ordered 750 T-shirts and hope to make it an annual event "for many years to come."

"We hope to see it 20 years from now," said Rothman, who conceived the idea for the run. "It might get bigger. It can't get any better."

For more information, go to www.seanfischelconnect.org.