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Indiana football team adopts kid with rare disease

USA TODAY logo USA TODAY 9/14/2017 David Woods
Butler football player Robert Shaffer, 8, with the team. © Butler University Butler football player Robert Shaffer, 8, with the team.

 

INDIANAPOLIS – The latest recruit to the Butler football team can do it all. Runs, throws, kicks.

Granted, he does not know the rules of football. And he weighs 55 pounds.

Robert Shaffer is 8. He has a rare disease. He has a rare spirit, too, and it is that spirit that is infusing the Bulldogs.

“I mean, this kid’s been through more than almost any of us can imagine,” kicker Drew Bevelhimer said. “He’s always full of energy, he’s always bouncing off the walls, he’s doing something crazy. But he’s always there to support us and help us.

“We’re helping him out a lot, but I think he’s giving us a little spark for the season.”

Shaffer recently “signed” with Butler in a ceremony set up by Team Impact, an organization that connects children who have serious and chronic illnesses to college teams.

Robert Shaffer's locker in the Butler locker room. The 8-year-old was recently signed to Butler football on a scholarship. (Photo: David Woods/IndyStar)

The 8-year-old is a second-grader at Valley Hills Elementary School in Decatur Township. He has been attending Butler practices, has his own Hinkle Fieldhouse locker and plans to be on the sideline for home games.

When he was 4, his face became puffy. His father, also named Robert Shaffer, said he thought it was an allergy to cats. Weeks later, the son could not stand up and was transported to Riley Hospital for Children at IU Health.

The boy was diagnosed with focal segmental glomerulosclerosis, or FSGS, a kidney disease for which there is no cure. NephCure Kidney International estimates nearly 20,000 people are living with FSGS, the second-leading cause of kidney failure in children.

Initial treatment consisted of injections, and now the disease is controlled by oral medication. Robert has been in and out of the hospital, in and out of school. A common cold could be deadly, his father said.

Nikki Wiles, his stepmother, said the family decided not to keep their son in a bubble.

“We don’t want him to live a sad life because he can’t do anything,” she said. “There’s weeks that we never leave the house because he’s sick. We want him to enjoy life when he’s got the chance.”

On this day, he was in a park across the street from his home, climbing over playground equipment and hurtling down a slide. As his parents were interviewed, he wiggled around a bench, going from lap to lap, chattering away.

He said he likes to play the video game "Minecraft." His parents said Robert has become more confident and is performing better in school.

On good days, life is good. There are bad days, too.

“I get scared getting sick sometimes,” Robert said.

His stepmother learned about Team Impact through a special needs mothers’ group. According to Team Impact, the program involves 1,200 children and 35,000 athletes from 450 colleges. Defensive coordinator Joe Cheshire spoke about Robert to the Bulldogs, explaining six players were needed on the leadership team. Any volunteers?

Forty hands were raised.

Bevelhimer, a Brebeuf Jesuit graduate, became the player contact because he is an Indianapolis resident. He said the Bulldogs are getting more out of the new relationship than their adopted little brother. Cheshire said Robert’s condition has supplied perspective to Butler players.

They all stood and clapped during Robert’s signing ceremony. Players send the family emails regularly.

“They all think they’ve got a lot of problems, whether it’s a girlfriend or it’s a class,” Cheshire said. “Then when you see Robert, and he’s this 8-year-old kid who’s fighting for his life. It kind of put things in context for them.”

Butler's Drew Bevelhimer and Robert Shaffer. (Photo: Jimmy Lafakis/Butler University)

Robert wears jersey No. 9 because he calculated that was the closest number to his age, 8½. It is also the number of backup quarterback Joey Lindstrom.

Robert is usually accompanied by his 6-year-old brother, Christian, who is autistic. Christian is drawn to Lindstrom and Robert to Bevelhimer. Robert has an “aura” about him, Lindstrom said.

When the Bulldogs see Robert, Bevelhimer said, they don’t see a disease. They see one of the guys.

“We have 105 guys this year, and he makes 106,” the kicker said.

Robert’s father said his son chose a football team because that is the sport they watch together on TV. The father, employed by Old Dominion Freight Line, said Robert is not a candidate for a kidney transplant and that the disease is not going away. For now, the son’s condition is “stable,” his father said.

Robert Sr. said an older son, Steven, was born prematurely and died about 11 years ago. The father is carrying burdens but is being lifted up by his son.

“He inspires me every time he gets up in the morning,” Robert Sr. said.

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