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Team learns life lessons from youngster with rare disorder

September 15, 2018

MANHEIM, Pa. (AP) — Manheim Central football coach Dave Hahn stood on the grass practice field on a late August weeknight, watching from afar as the starting defense got its reps in preparation for a game later that week.

Hahn wasn’t focusing on X’s and O’s, though. He was talking about a boy who’s been helping the team at every practice, and about why he decided to make that boy, 9-year-old Jaxon Brubaker, a manager this season.

“It’s the best decision I’ve made in my four years as a head coach,” Hahn said. “We as coaches are big in teaching our players acceptance, being part of a bigger cause and not just being all about yourself. I think Jaxon has taught these kids that.”

Jaxon, a third-grader at Manheim Central’s Doe Run Elementary School, can be seen at most Barons football practices and every Friday night on the Manheim Central sidelines, either handing out water bottles to players or retrieving the kicking tee after every Barons kickoff.

Jaxon’s story and personality have given his Baron teammates a new perspective.

The diagnosis

On May 28, 2009, Jaxon was born a month premature at Lancaster Women’s & Babies Hospital. He weighed a scant 4 pounds, 15 ounces. Seven months later, Jaxon needed surgery to drain fluid that had built up deep within his brain. It was the first of many surgeries Jaxon would have to endure.

For a long time, parents Nikki and Justin Brubaker, of Manheim, went without solid answers as to what was causing so many medical setbacks for their son. Sure, Jaxon was born premature. But why wasn’t he growing as quickly as other kids his age? Why the constant health problems?

Those answers finally came last year when Jaxon underwent a six-hour kidney surgery followed by a five-hour abdominal surgery at a children’s hospital in Wilmington, Delaware. The urine in Jaxon’s kidney was not draining properly, commonly referred to as nephrosis.

In the weeks that followed, doctors connected the dots and diagnosed Jaxon with Saul-Wilson Syndrome, an extremely rare genetic disorder first discovered in 1990 and characterized by short stature, a small head, cataracts and generalized skeletal displacements, among other abnormalities.

“The things that hooked it together were hearing loss, cataracts, osteoporosis and rickets,” Nikki Brubaker said. “Cooper and Jaxon have all of those conditions.”

Jaxon and his 5-year-old brother, Cooper, who also has suffered his share of medical challenges, have both been diagnosed with the disorder. The Brubakers say there are only 13 people in the world known to have Saul-Wilson Syndrome, and they communicate on a shared Facebook page. Jaxon and Cooper are the only siblings known to have the disorder.

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“He’s a bundle of energy,” Manheim Central offensive lineman Josh Painter said of Jaxon. “And he loves dancing. His little brother is funny, too.”

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The boys’ infectious, fun-loving energies show how they’ve handled their health problems.

“He’s a bundle of energy,” Manheim Central offensive lineman Josh Painter said of Jaxon. “And he loves dancing. His little brother is funny, too.”

“Honestly, we’re biased, but they are two of the greatest kids,” Nikki Brubaker said of her sons. “Their personalities are amazing. And Jaxon’s not afraid to approach anyone. I can’t go anywhere with Jaxon that he doesn’t see somebody he knows.”

Though there are still numerous appointments and checkups throughout the year for their boys, Nikki and Justin Brubaker finally have a sense of peace since the boys received a clear diagnosis.

“You don’t have to chase your tail anymore,” Justin Brubaker said. “There’s no unanswered question. You’re going to a doctor knowing what he’s doing. He will send you to somebody that can treat it. We kind of have a pathway now that we know.”

Meeting the Barons

During Jaxon’s weeklong recovery after surgery last summer, Justin Brubaker reached out to some of Jaxon’s favorite athletes and musicians in hopes of raising the spirits of his oldest son.

The effort resulted in Los Angeles Rams running back Todd Gurley and quarterback Jared Goff each sending short videos of encouragement. The Houston Astros’ Derek Fisher, a Cedar Crest High School alum, sent a signed picture. Two of Jaxon’s favorite musicians, Kenny Chesney and Justin Bieber, sent care packages. And, just days after Jaxon arrived back home in August 2017, he got a visit from the head coach and two players from his favorite high school football team, the Manheim Central Barons.

During the visit to the Brubaker home, Coach Hahn invited the family to be sideline guests at a game last season. The family decided to take up the offer for the Barons’ Week 6 home matchup with Elizabethtown. In the days before the contest, Hahn called and invited Jaxon to the Thursday practice before the game.

There Hahn presented Jaxon with a pair of surprises. The first was giving Jaxon a brown No. 23 Barons jersey — Jaxon’s favorite number. The second was putting Jaxon in at running back for the final play at the goal line of the Barons’ two-minute drill offense. Quarterback Evan Simon snapped the football and handed it off to Jaxon, who followed a bevy of offensive linemen into the end zone for the score. Simon lifted Jaxon onto his shoulders as the team rallied around him.

“It felt pretty good,” Jaxon said recently, reflecting on the experience.

Jaxon hung around the team for the remainder of the 2017 season.

“By the end of the year,” Coach Hahn said, “I figured, if he’s gonna be around and we love having him around, I asked his dad, ‘What do you think about making Jaxon a team manager next season?’ ”

Perspective

As a result of his disorder, Jaxon is only 3 feet, 1 inch tall and weighs 32 pounds.

“To put it in perspective ... Jaxon is the size of a 3-year-old, and Cooper is the size of a 1-year-old,” Nikki Brubaker said.

Doctors aren’t yet sure how much taller Jaxon might grow. Although his size hasn’t stopped Jaxon from trying to live life as any other 9-year-old might, some children his age have had trouble coming to grips with why Jaxon is so much smaller.

“We were at a Manheim Central baseball game last spring,” Nikki Brubaker said, “and this little boy came over to Jaxon and was like, ‘I’m bigger than you. I don’t understand that. Why are you so small?’ ”

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“You may be right. Jaxon is little,” Simon said. “But do you know what little people have? Big friends.”

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After the boy asked this question a fourth time, a fan sitting behind Jaxon spoke up. The fan happened to be Simon, the Barons’ football quarterback.

“Hey. What does it matter how big he is?” Simon said to the boy.

“What do you mean?” the boy asked.

“You may be right. Jaxon is little,” Simon said. “But do you know what little people have? Big friends.”

It’s a perfect example of how the Barons football players have come to support Jaxon, who has returned the favor with high-fives and a positive spirit at practices and games.

“At the same time it’s humbling,” Simon said recently. “Not everyone can compete on Friday nights. That’s one way some of us look at it. ... If we don’t have the best practice, and you’re walking off, you see Jaxon, and you think, ‘Man, we didn’t give it our full effort today.’ And he probably would, considering all the energy he has.”

In other words, Jaxon has given Barons football players and coaches a sense of perspective.

“And that’s why I like having him around,” Coach Hahn said. “He’s a big part of Manheim and Manheim Central football. ... When I see Jaxon, it gives you that little bit of a mental break you need. My mind is always racing, thinking about all the things I have to do as a coach. Then you see Jaxon and the things he deals with, and you think, ‘Man, what I have to deal with is nothing.’ ”

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Online:

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Information from: LNP, http://lancasteronline.com

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