Putting himself on the map: Warren teen competes in National Geographic Bee

August 5, 2013

When Jean DiGrande was five months pregnant with her first child, doctors detected a spinal abnormality so severe that it was unlikely the baby would survive the birth. They advised her to consider terminating the pregnancy.

She was 36, and after struggling with infertility, she and her husband, George, had resorted to in vitro fertilization to conceive Will. “God finally gave this child, and whatever it is, it is,” Jean thought.

Born with an 80-degree curve in his spine, fused ribs and without a right kidney, Will’s neck was so severely bent it was virtually inseparable from his shoulder. But he had a healthy heart and lungs, and doctors at Children’s Hospital of Philadelphia, where the DiGrandes, who live in Warren, sought specialized treatment, told her about a pediatric orthopedic surgeon in San Antonio, Texas. He had been working with other children, who, like Will, have thoracic insufficiency syndrome.

The DiGrandes flew to Texas, where their nine-month-old was outfitted with a titanium rib implant. It works like a car jack, separating the ribs so the heart and lungs can grow normally. For the last 14 years, twice a year, Will has returned to Santa Rosa Children’s Hospital of San Antonio to undergo surgery to adjust the titanium rib implant and strengthen and straighten the spine.

His has been a blessedly normal childhood — family vacations instead of ventilators, soccer trophies instead of sitting on the sidelines. Normal, except in one other respect: It turns out one of Will’s gifts is a prodigious recall and spatial intelligence that has landed him a spot in the National Geographic Bee today, competing for the $25,000 grand prize. The top ten scorers in the preliminary round will go to the final Tuesday, which is hosted by Alex Trebek.

Will’s talent first manifested itself in kindergarten when Jean DiGrande, who works with her husband at their State Farm Agency in Gillette, lost track her of car in a shopping center parking lot.

The 5-year-old remembered where she parked — pretty handy, but probably not his divine purpose.

But in the years since, Will’s interest in geography grew. First came his obsession with an electronic U.S. states and capitals game. His parents stoked his interest with globes, map puzzles and books, and in sixth grade, he won Warren Middle School’s geography bee, a stepping stone for the state and national bee, sponsored by the National Geographic Society.

He placed fifth in the statewide bee that year, and after winning the school bee a second time, returned to the state bee in 2012 but failed to advance beyond the preliminaries.

This year would be the last in which he would be eligible, so he doubled down. “I really wanted to win,” he says. “I knew I had to win.” His Christmas present? The enormous National Geographic Atlas of the World, Ninth Edition.

He won the statewide competition in April (the winning question asked which Canadian province is Niagara on the Lake located; the family had been there the week before on spring break).

He is also captain of Warren Middle School’s academic tournament team, which won first place at Seton Hall’s academic tournament last year, and he and the team will head to D.C. again the week after the GeoBee to complete in the National Academic Championship.

“I think what God took away, he gave in another area.”
And in August, he’s back to San Antonio for another surgery, which will continue until he is 18 or his spine has stopped growing.

The vertical, expandable rib was first invented in 1987 to treat a 6-month-old boy who was missing his left chest wall, giving him no support for his lungs and leaving him dependent on a ventilator. “Take him home, enjoy him, he’s going to die,” his parents were told again and again.

But Melvin Smith, a surgeon at Children’s Hospital of San Antonio, consulted pediatric surgeon Robert Campbell, who had an engineering background, and they doodled on a napkin an artificial wall made out of metal pins typically used to wire hips together. Campbell used vice grips and a lot of force to wrap the pins vertically from the baby’s clavicle to his one existing rib. Four days later, the baby was off the ventilator.

But as the child grew, the pins wouldn’t, so Campbell worked with a custom prosthesis firm to develop a expandable rib out of lightweight titanium — a long and expensive process, particularly considering the tiny pool of patients who would benefit.

Lori Buegeler, the titanium rib program coordinator at the San Antonio hospital, says it’s so rewarding to see her “rib kids” grow up. “He’s going to be someone someday,” says of Will. “What these guys sometimes lack in physical ability, they make up in intellect. I think what God took away, he gave in another area.”

During Will’s first surgery at nine months old, however, his spinal cord was nicked, resulting in his right leg becoming shorter and weaker than his left. While the VEPTR corrects his scoliosis to a great extent, he wears a brace on his right leg and a shoe with a 1¼-inch heel lift. He may move with a little hitch in his step — but it hasn’t slowed him down.

Will relays advice his mother gave him when he was nervous about whether or not he’d advance to the state bee that first year: “You are going to make it, so act like you made it. Don’t wait until you’re chosen. What makes you a winner is when you do things that other people aren’t willing to do.”