Jaxon's Journey: Navigating rare disorders with Nicklaus Children’s Hospital

Jaxon Budnick has faced more medical challenges in his seven short years on this earth than most adults will experience in a lifetime.

Before he could even walk, Jaxon underwent eight hours of cranial reconstructive surgery because the part of his skull covering the forehead had fused prematurely and would not allow the brain to grow. During the painstaking operation, an incision was made from ear-to-ear, his face was peeled forward, and the muscles and nerves were moved so the surgeon had clear access to work on his skeleton.

“Quite literally, the skull was broken apart to pieces and rebuilt,” Cliff Budnick, Jaxon’s father, explains.

“It's probably one of the most insane, rigorous procedures that a little person could have outside of open-heart surgery,” says Dara Budnick, Jaxon’s mother.

Jaxon also was born with a hole in his heart, a horseshoe-shaped kidney and urological issues that would require four procedures before he turned three. He had facial deformities, including misalignment of his eyes, and experienced developmental delays. His muscle tone is diminished, and he struggles with the motor skills in his hands when he opens doors or uses colors in a coloring book, even with pulling up his pants. He was diagnosed with autism last summer, as well.

When the Budnicks, who live in Jupiter, Florida, realized the complexity of Jaxon’s medical issues, they began researching options across the country for his care. And everything they heard or read kept steering them to the Nicklaus Children’s Hospital in South Florida.

“Fortunately, we had a lot of options and resources, and it just so happened that right in our relative backyard at Nicklaus was a team of physicians that we were referred to from a few different people,” Cliff says. “That's what ended up putting us in the Nicklaus group and having surgery down at the main campus in Miami.”

Jaxon continues to receive follow-up care and therapy at Nicklaus Children’s Palm Beach Gardens Outpatient Center. He’s one of the many kids who have been impacted by the good works of the Nicklaus Children’s Health Care Foundation, founded by Jack and Barbara Nicklaus in 2004, which is the beneficiary of this week’s Cognizant Classic in The Palm Beaches at PGA National.

Cliff, an avid golfer, plans to take his wife and son to the tournament on Saturday, and they’re sure to be in front of the TV on Play Yellow Sunday when the PGA TOUR’s best and its fans are in encouraged to wear Nicklaus’ signature color to increase awareness of pediatric healthcare. The Play Yellow campaign, launched in conjunction with the TOUR, has already raised more than $100 million to support Children’s Miracle Network Hospitals.

Today Jaxon is a happy and rambunctious youngster whose “superpower,” his mom says, is that he loves people. He also loves all things golf, particularly Tiger Woods and his teenage son Charlie, and Jordan Spieth. Jaxon also became obsessed with Hideki Matsuyama’s last name when he won the 2021 Masters Tournament.

“For like six months, he created a song about Matsuyama, Matsuyama,” Dara says, laughing.

And of course, Jaxon likes Nicklaus, whom he has met on several occasions. He and his mom and dad had dinner at the Nicklaus’ house two years ago and shared their story with donors to the foundation, which Dara calls a “wonderful privilege.” They are also working with Jack and Barbara and their son Gary Nicklaus to raise money to expand the neurobehavioral program for kids who suffer from rare conditions like Jackson at the Outpatient Center.

The 7-year-old even got the star treatment when he filled in for the World Golf Hall of Famer and handed out trophies at the awards ceremony for a golf and tennis fundraiser in December. “Jaxon, I think now, thinks he’s at the same status as Jack,” Dara says with a chuckle.

“Honestly, it's been the greatest because for Jackson it's helped build up his confidence.,” she continues. “… He might not be able to remember all of his ABCs and 1-2-3s, but he is the best at being in front of people and shaking hands and smiling and just really being an amazing kid.

“Everybody around him, when he walks in the room, people can feel it and see it. So, this experience of, and getting his involvement with the Nicklauses and the hospital, we just feel completely grateful for because it's helped Jackson from so many other levels.”

When he was still a toddler, Jaxon’s many birth defects led the doctors at Nicklaus Children’s to suggest genetic testing for him and his parents. While the first round of testing was normal, the second revealed that Jaxon had CDK-13 disorder, a genetic mutation on the seventh chromosome affecting early development.

The disorder was first discovered in 2016, the year Jaxon was born, and is so rare that he was one of less than two dozen people with the disorder when he was diagnosed. With more affordable and accessible genetic testing, the number is growing but still less than 500 are known to harbor the mutation.

Not much is known about the long-term prognosis. Dara says the doctors will treat things when and if they happen. In the meantime, Jaxon has physical, occupational and speech therapy three times a week. Otherwise, he’s a typical kid who takes karate and likes to play with his friends.

No matter what happens, though, the Budnicks know they have the doctors at Nicklaus Children’s Hospital on their side.

“We joke and we say one day when Jackson hopefully has a bar mitzvah or gets married, there'll be a table with all of his doctors sitting around celebrating his life,” Dara says. “That's how much they mean to us. They're part of our extended family at this point.”