Fifteen years before Kayden Rhoades threw out the first pitch at Kauffman Stadium on Thursday afternoon, he was born with the rare condition of hydranencephaly.
“A central nervous system disorder characterized by an enlarged head and neurological deficits,” as the National Organization for Rare Disorders describes it.
Most babies born with it will not survive more than a year, according to WebMd, and “those who survive past infancy will have shortened life expectancies … (and require) constant care and management during their lifetime.”
Less clinically, his mother, Shanna said Thursday, “They can’t predict what his time is.”
Certainly not after she initially was told he had 24 hours to live. Then mere months. And then knowing that doctors told them 97 percent of his brain is missing. And that he’d be incredibly lucky to live to 30.
All of that, though, also helps explain the astounding path from Sioux City, Iowa, for the family’s first major-league game — and Kayden’s debut on a big-league field enabled by a device his father, Dustin, decided to create despite no inherent aptitude for such innovation.
“Wanna Have A Catch” it’s called, aka the WHAC.
A perfect name, really.
From the minute Shanna was the first on the receiving end from Kayden earlier this year, the concept became something both poignant and uplifting.
Because it makes for a different sort of “Field of Dreams.”
One that on Thursday left the family feeling overwhelmed by what they called a “surreal” scene that featured being cheered on by Royals players, a bat donated by Nicky Lopez and Kayden’s pitched tennis ball to mascot Sluggerrr acquiring a green beauty mark of Kauffman Stadium grass after it scuffed just in front of home plate.
What they called a “bucket list” moment for Kayden was just the latest way the invention has opened up the world for the oldest of their four children as his parents try to seize all they can for him.
The feeling can’t be put into words, Shanna said, as they overlooked the field early in the game.
The joy may be hard to discern for an outsider. But it’s something they can feel from his body language after he engages the mechanized arm of the machine with a turn of his head from his wheelchair … and often wants another and another and another turn.
They also hope that the WHAC, the similarly engaged “Switch-hitter” that preceded it and other “custom creative solutions for people with varied needs” they seek to provide through their Ability Tech company helps others facing similar challenges understand that they needn’t settle for conventional answers.
“It shows them that no matter how disabled or no matter your setbacks, there’s room for you to play in baseball,” said Dustin, who says he’s currently about “12 years out on projects” with his startup driven by the mission that “nobody gets left out of anything in life.”
Even with a disability, he added, “there’s still a spot for you to play with your peers in baseball and not to just kind of sit by and watch. To be active. We’re just trying to show people that there’s ways out there and not to just settle.”
All in large part, alas, because they don’t know what his time is … and want to make the most of what there is.
In his early years, Dustin said, “We did the whole mindset of ‘let’s keep him here as long as possible.’ So all you’re doing is just trying to keep him healthy, keep him alive and going for as long as possible.”
Over time, though, they envisioned a different dimension to Kayden’s life. A dimension beyond what they had once assumed was destined not to include sports or other conventional activities.
But Kayden’s physical challenges didn’t eclipse an obvious yearning he had inside.
One we might all recognize.
“He’s a very outgoing kid, sociable: Whatever thing you can do to get him around people and just be part of the action and part of the conversation, he’s all for that,” Dustin said, later adding, “It’s just that inclusion part with him … As long as he’s just part of the group, he’s on top of the world.”
His opportunities to join were greatly enhanced by the arrival of the Miracle League in Sioux City in 2015.
“Baseball diamonds weren’t exactly designed with wheelchairs and crutches in mind,” notes a program whose buddy system format “serves children and adults who suffer from any physical or mental disabilities, which causes them to be excluded, whether intentionally or not, from conventional Baseball leagues.”
The league provided a fine opportunity for Kayden. But after a few years with his father always hitting and throwing for him, Dustin had an epiphany:
Just because there was nothing out there to make Kayden’s baseball experience more independent or proactive didn’t mean he couldn’t come up with one himself.
Nevermind that the U.S. Marine Corps veteran had no specific background in such a realm of creativity. He hit the drawing board with his father, Steve, who grew up on a farm and liked to tinker and build things.
With the help of a lot of YouTube videos and the trial and error of numerous prototypes, they came up with the “Switch-hitter.”
The apparatus allowed Kayden to swing a bat and hit a ball off a tee by turning his head into a button.
Sometimes, it would take some prompting for Kayden to hit the switch. Once he got started, though, it wasn’t unusual for him to hit it repeatedly before they could even reset it for him to hit again.
That profound change also provided the fundamental dynamic of the WHAC.
The inspiration for it was spurred by Miracle League of Sioux City board member Kevin Negaard after reading “A Year of Playing Catch” by author and blogger Ethan Bryan of Springfield, Missouri.
Earlier this year, Negaard launched a “Wanna Have A Catch?” campaign to fundraise for the Miracle League and essentially challenged Dustin to create a pitching machine for Kayden.
A few months later, it was another mission accomplished with a bat basically traded out for what Dustin referred to as a throwing arm for dogs.
As fulfilling as it had been to help Kayden be able to swing a bat, there was something all the more meaningful in what this meant.
Starting with that first throw to his mom.
“The WHAC part,” Dustin said, “allows him to interact with somebody else.”
By mid-summer, he was throwing out the first pitch for the Sioux City Explorers’ minor-league team. On Sept. 11, the family traveled to Ozark, Missouri, where Kayden played catch with an Ozark Mountain Duck player.
It’s all a bittersweet feeling, Shanna said, because his health fluctuates and nothing is certain ahead except that there really is no time like the present.
In this case — with the help of Bryan — that was Thursday in Kansas City and a beautiful bucket-list moment for the family.
“Wherever we go for Ability Tech, we all go and make it a thing for him,” Dustin said. “So that way when the day comes that he’s no longer with us, we all have those memories.”
Memories the family has been creating in every way possible.