Colten Pitner, a detective with the Peruvian Police Department and a student in the software development program at Ivy Tech Community College, recently found himself in a bind.
He had been tasked with creating a project for one of his classes, he said, but what he could choose to create was a bit vague.
And while he racked his brains trying to decide whether he wanted to build a website or design an app, Pitner once picked up his 7-year-old daughter, Riley, from school.
“I asked her what she was doing and she said she built a robot in science class,” Pitner said. “And she said that was her favorite thing all day. So I said, ‘Great, let’s build a robot. Let’s try to make the best robot we can make together.’ I said that would be my project for the class.
And they did.
The pair would also spend as much time as they could together building the robot, with Pitner showing Riley technology concepts such as “loops” and “select instructions”, and Riley showing his father the power of childish imagination and wonder.
“It was one of those where I could do it (the project) in school for myself and hopefully get a good grade,” Pitner said. “But throughout my schooling there was so much time that I was stuck in the other room studying or taking tests or doing homework, so having a few hours doing homework where I could just spend them with Riley, I can’t express how much fun it’s been and how happy I’ve been doing it for the past two weeks.
And that all brings us to a classroom last week inside the main building at Kokomo’s Ivy Tech campus.
Standing in front of a few of his classmates, Pitner revealed “Witchy” the robot – named in honor of the Halloween season – publicly for the first time; Riley stood beside him.
For a few minutes, the father and daughter duo showed the class how Witchy walks around in certain shapes controlled by predetermined codes the pair created, earning smiles and even a few laughs from those in attendance.
But the project itself, especially for Pitner, meant more than a note and a few minutes to teach a robot how to slide on a table.
And it meant so much more because moments like these are fleeting for the Pitner family.
In June of this year, Riley was diagnosed with CLN3, also known as Juvenile Batten Disease.
Batten disease is a fatal neurological disorder that affects cells in a person’s body, Pitner explained, and there is currently no cure.
“In a normally functioning body, cells take in nutrients and use those nutrients,” he said, “and then there’s always a waste product. Our body then recycles this waste. Well, the Riley cells are not able to recycle that waste, so you have a buildup of it, and that causes problems.
These cells eventually die, Pitner added.
Children with the disease – which is usually diagnosed around the age of 5 to 7 – then develop vision problems and seizures.
As the disease progresses, lack of mobility and sleep disruption become major factors, Pitner said, eventually leading to other disorders like Parkinson’s disease and dementia.
And while life expectancy isn’t always a concrete number, some diagnostic research reveals that many children with Batten disease die in their late teens to early twenties.
“After being diagnosed, once it happened, I knew I wanted to spend every minute I could with her, every day I could,” Pitner said. “A lot of people talk about what they would do if they only had that much time. Unfortunately, we were told we were short on time, so I’m going to make every day count.
“It has certainly been a nice distraction at home,” he added. “Our focus right now is just to slow down the progression. Since there is no cure, it’s just a matter of slowing things down and buying time. We can do things for his mobility. But when it comes to the mental aspect, there’s not much we can do. So I guess my best bet is to keep learning new skills. And it was a nice escape from reality, but it also hopefully helps him keep his little brain moving.
And Pitner’s inspiration amid the struggles his family faces has also rubbed off on his teacher.
“He’s just an impressive student,” Julie Byrd said. ” I am not joking. He walked over to the plate. I think what touched me the most was just that he said, “I want to spend time with my daughter through this.” I thought that was the coolest part.
Riley is currently in medical trials, which are taking place in Texas, but Pitner stressed that one of the most important pieces of the puzzle is to continue to raise awareness about the disease itself.
If you’d like to learn more about Riley’s journey or donate to the Pitner family, a GoFundMe page has been created for them. You can visit this website at https://www.gofundme.com/f/6yyq9-rileys-fight.
