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Papillion-La Vista basketball game provides shining moment

Team manager with rare disorder gets shot at starting lineup
Published: Nov. 30, 2021 at 10:42 PM CST
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OMAHA, Neb. (WOWT) - What middle school kid wouldn’t love to have his name in the starting lineup against his arch-rivals, with the first play of the game drawn up for him? And to have everyone on his team pulling for him to make the shot.

That was the plan when Papillion Middle School tipped off against the Monarchs at La Vista, as coach Tommy Parrack drew up a play to get the ball to 13-year-old Jack Johnson on the wing.

“For me to go down to the bottom and shoot it,” Jack said after the game.

Although he had to give it a couple of shots, Jack finally got his name in the scorebook, to the cheers of the crowd and both teams.

His teammates will tell you Jack is extraordinary and that’s why they wanted him to get a chance to actually play in a game. The seventh-grader is the Papillion Middle School Titans Manager for football and basketball.

He loves sports and always wanted to play, but he’s spent his life outgunning the rare genetic disorder Menkes disease, incurable and deadly for young boys. Fortunately, Menkes was diagnosed when Jack was an infant and he’s been receiving treatment from Dr. Stephen G Kaler, a leader in Menkes research, all his life.

”You know its breakthrough stuff,” Jack’s father Eric said of the treatment and research Kaler has been able to provide the Johnsons. “He tells us all the time, we can’t know what to expect because he’s cutting edge. So when I asked him what high school’s gonna look like, he said Eric, I didn’t think he would make it past his third birthday.”

An emotional father spoke of his sons’ positive and cheery attitude. Jack’s younger brother also has Menkes, which is hereditary and handed down to boys. Two other siblings, their teenage brother, and sister do not have the disorder.

His best friend on the team, Kenyen Slobodny, said Jack is loved by all.

“I just love him,” 13-year-old Kenyen said. “We love him as a team, as a teammate to us. He’s happy, he got to play today, start. He’s family to us, the whole school, everywhere, everybody just loves him.”

Jack said his secret to getting through tough days is to “just power through it.” And perhaps most inspiring is his plan for the future, one that would keep him on the court or the field.

“I wanna be a manager in the NBA or NFL or something like that,” Jack said.

Considering Jack’s positive attitude and ability to overcome long odds, he just may reach those heights.

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