The smile on Isaac Barchus' face says it all. In the photographs, the 8-year-old, who suffers from a rare disease, is grinning ear-to-ear, standing next to a kneeling Ndamukong Suh, his all-time favorite football player.
Suh and several other towering Detroit Lions defensive linemen met Isaac on the sidelines after a recent practice. They signed and presented a blue-and-white Lions souvenir football. Stephen Tulloch peeled off his gloves, still sweaty, and handed them over.
“They swarmed him,” said Kathe Barchus, Isaac's mom, laughing.
Then came Isaac's turn with the Big Man himself — a hug, a chat and autographs on Isaac's Suh rookie card and his miniature No. 90 jersey.
Two days later, Isaac and his family took a limo to Ford Field; had a surprise encounter with Dominic Raiola, another ex-Husker, on the sidelines during warmups; and met Suh's family, joining them in their suite for hot wings and Detroit's game against Indianapolis.
“It was awesome,” said Isaac, still smiling, still wearing his jersey, still up for any debate about the Lions' — and Suh's — abilities.
The trip, sponsored by the Make-A-Wish Foundation of Nebraska, was just what the doctor ordered, not just for Isaac but also for his family.
Isaac suffers from a condition called CANDLE Syndrome, an extremely rare autoinflammatory disease only named in 2010. Although his condition has improved considerably from a year ago, it has slipped over the past six months.
Doctors have increased his doses of steroids and the experimental drug he began taking last year, but disease symptoms — including painful rashes and arthritis-like joint pain — have broken through. His appetite and growth also have flagged. Isaac has grown about six-tenths of an inch in the past year, well below the average for kids his age. Doctors are considering growth hormones, a feeding tube or both.
A day after returning home from Detroit, he and his mom flew back to Bethesda, Md., and the National Institutes of Health, where Isaac has been treated since he was 19 months old.
“This was huge for him,” Kathe Barchus said. “It was such a wonderful, wonderful experience for him.”
That was also about the last time the family, which also includes Isaac's dad, Steve, and older brothers Ian, 14, Kyle, 16, and Travis Bader, 24, went on a family vacation.
“Even Kyle and Ian, who are not football people, enjoyed it,” Steve Barchus said. “They were, like, 'This was the best day ever.'”
Brigette Young, Make-A-Wish of Nebraska's president, said the organization always includes parents and siblings when it sets out to grant the wish of a child with a life-threatening condition.
“Everybody is part of his illness,” Young said, “and that battle is a family effort.”
Young said the organization has sent a couple of other youngsters to meet Suh. “He does a phenomenal job with them,” she said.
Steve Barchus said the foundation, the Lions organization and the Suhs “bent over backwards” for the family.
Between attending the practice and the game, the family visited Detroit's Greektown historic district, the Henry Ford Museum and Ford Motor Co.'s manufacturing plant.
Isaac picked up several lessons on the trip, just in case his teachers at Westside's Sunset Hills Elementary think he was slacking. Cars, he discovered, are “basically handmade,” despite all the robots on an assembly line. And Henry Ford started his manufacturing empire in what was basically a small shed.
Students and staff at Sunset and other Westside schools, as well as fellow members of Countryside Community Church and other groups, last year rallied to support Isaac and his family through fundraisers and a bone marrow donor drive.
Last fall, Isaac was scheduled to become the first with his condition to undergo a stem cell transplant. But at the last minute, approval came for the new drug he now takes. If he were to require a transplant, plans now call for a bone marrow transplant.
But they're no slam dunk, Kathe Barchus said.
“We're pretty blessed we got the drug trial to come through,” she said. She later was told the decision came down to a drug company executive who had a son the same age.
The family has done what it can to raise awareness about rare diseases and the need for bone marrow donors.
Meanwhile, Steve Barchus plans to join the ranks of Santa's helpers and entertain some local disabled children. A hairdresser friend has even offered to dye his hair, including the beard he's grown, completely white. Isaac plans to stand in as an elf.
“He said, 'Dad, I want to be your helper,'” Steve Barchus said.
Still, it'll be tough to top his football experience.
On game day, the family visited the sidelines before kickoff. Louis Delmas stopped by to say hi. Raiola ran over and gave Isaac a regulation football. They're still marveling that wide receiver Calvin Johnson, who's been nicknamed Megatron for his Transformer-like power and compared to Jerry Rice, caught the full-size pigskin one-handed.
Isaac posed for pictures with the Lions mascot and cheerleaders, with Olympic gymnasts and with Detroit Tigers pitcher Miguel Garcia.
Isaac since has put Kyle Vanden Bosch at No. 2 on his favorite player roster and Raiola at No. 3.
But when it comes to No. 1, he's sticking with you-know-who.
“Suh was the best,” he said.
» The Nebraska chapter granted a record 114 wishes during the fiscal year that ended Aug. 31.
» About two-thirds of the wishes involve Disney visits.
» Another recent wish that was fulfilled: Arrange a pop star experience for a Lincoln boy, complete with screaming fans, radio and TV interviews and a trip to a Los Angeles recording studio.
How you can help
» To volunteer for the Make-A-Wish Foundation of Nebraska, call 402-333-8999. To donate, visit www.nebraska.wish.org. » To learn about the National Marrow Donor Program or about joining its Be the Match Marrow Registry, go to www.BeTheMatch.org.
Contact the writer: 402-444-1223, firstname.lastname@example.org