Senior Copes with Serious Illness Through Robotics

The high-school Robotics competition held at Hail Arena in Kansas City was about to start. Rob Kelly, with his wired rimmed glasses and shaggy curly black hair, stood next to his Sargon Robotics teammate Tyler Cecil in their team box. Rob was finally happy.

It was April 2010 and Rob, then a junior, was participating in his first robotics competition. Rob suffers from a chronic disease known as Eosinophelic Gastroenteritis, a dysfunction of the immune system in the intestinal tract, which causes the body to fight against itself. For six years, the illness altered Rob’s life.

“I try not to think about that chapter of my life,” Rob said. “I don’t let it define me.”

Rob joined robotics late in his sophomore year after the initial build season, the period of time during the year in which members of the robotics club work together to build a functioning robot for the annual spring competition.

At a young age, Rob’s grandfather bought him a small radio from a local garage sale. He gave it to Rob along with a set of real tools. At an age when he could barely walk, Rob would take apart the radio and assemble it back together – piece by piece, over and over again, mesmerized by how each component of the radio fit together.

This interest in how things are built, in understanding the way they work was what drew him to programming.

“You can figure out ways to do the most amazing things with simple equations,” Rob said. “That’s really what programming is.”

Programming is not just a side hobby for Rob though; it helped him cope with E.G.

***

As he sat in his room at home early in his 5th grade year at St. Paul’s, incisive, throbbing twinges in his lower abdomen stung Rob’s side, as if someone was continuously stabbing him. The throbbing continued and worsened from occurring every few days, to every few minutes, to every few seconds.

For Rob, stomach flu-like symptoms, upper respiratory pain, sinus, lung, and ear infections continued to recur, each spiraling into long, drawn out illnesses.

The cutting aches in her son’s stomach and persisting illnesses began to concern Rebecca Kelly.

Rob visited countless doctors, each was baffled at the rarity of Rob’s physical state. With medical conditions like Rob’s, diagnoses would usually take up to two or three years and eight to 10 doctors.

At first sight, Rob was diagnosed with mono, but as his doctor studied his charts closer, he found it to be much more serious.

Rebecca was recommended to take Rob to the top G.I. specialist in the country practicing  at Children’s Mercy Medical Center in Kansas City. There, doctors ran tests exposing abnormalities in his health. “We were relieved to know what it was,” Rebecca said.

After his diagnosis, Rob would lie on a hospital bed, hooked to an IV feeding him nutritional replacement liquids, as a heart monitor repeatedly beeped beside him. He no longer could eat normal food due to his body’s inability to digest it.

“The hospital trips were a nightmare,” Rob said.

At times, Rob had to resort to eating formula food fed into his intestines or nose from a small tube. Rob however, being strong willed, refused to be fed in such a way. He drank the tasteless formula for years as his only source of nutrition.

“It tasted nasty,” Rebecca said. “I don’t know how he did it.”

Rebecca and her husband tried everything to help prevent Kelly’s illness from deteriorating further.

They put in new heating and cooling systems in their house with Heppa Filters and UV lights to remove mold and allergens. They took out the old walls, carpeting, floors and bathrooms in their house. They checked into a hotel for six weeks – perhaps the renovations in their home were causing flare ups in Rob’s immune system.

The immunosuppressants Rob was prescribed, though they helped treat his chronic condition, began to take their negative effects on his body and mental state. His immune system became extremely weak to the point where he would frequently become sick. The combination of the E.G. and suppressants caused Rob to miss out on normal social activities teenagers his age participated in, including school.

Rapidly gaining a social disconnect from the world outside of his home fueled Rob to develop slight depression. Rob looked for anything to do, anything to keep his mind off of the physical hurt and mental anxiety he was enduring.

Comedy would occupy most of Rob’s television and radio during the day. David Sedaris’s witty jokes and George Carlin’s TV hilarity helped Rob cope; the laughs and humor overshadowing the downbeat note his life was constantly hitting.

“When you spend a lot of time by yourself like I unfortunately did,” Rob said. “You sort of begin to rewrite how you think socially and I think the comedy movies sort of rubbed off on me in a way.”

Rob started developing a unique sense of humor, a personality trait his peers in robotics appreciated in him.

“Half of our inside jokes involve science and math,” Cecil said. “Rob made a list of all of his jokes he’s made during robotics called ‘Robeth the I.’”

With his prevalent interest in math, Rob began to program web codes into his computer to pass time. Each code represented a different component to what Rob was crafting through his computer. Different colors and languages meant and stood for different things. It wasn’t simply numeric equations, programming was communicating with the computer with various words and tasks to create whatever he wanted.

“He spent a lot of time alone,” Rebecca said. “Programming kept his mind off of the pain.”

Rebecca had noticed a fast wit for math in her son from the start. In the prime of his illness, Rob would struggle at night to fall asleep. A doctor recommended Rebecca buy a tedious book for Rob to read before he went to bed. The idea was the book would tire him, and eventually he would fall asleep sooner. Rebecca went to the bookstore and purchased a couple books relating to science and advanced physics, expecting her son to nod off quickly from the material.

Instead, at only 13-years-old, Rob would stay up until late hours of the night, enthralled in each book, rapt by the formulas and equations.

That’s when Rebecca and her husband knew their son needed a challenge.

Rob would spend countless hours at home when he was too sick to attend school, typing away codes into his computer, building layers upon layers of simple mathematical functions and equations.

Programming gave Rob recurrent optimism to carry on. He could create anything he wanted through programming – games, websites. It distracted Rob from his health, giving him continual hope even though at times, he felt overpowered by his illness.

“In a situation like that, you physically and emotionally cannot control yourself,” Rob said. “But you have to.”

***

Ten months after his first robotics competition, Rob sits in the computer lab connected to the main scope of the robotics club room, typing an assortment of codes into the computer in front of him. It’s the crucial peak of build season. Rob is perfecting the camera that will be mounted into the master robot for the 2011 spring competition. He is the mind behind all visual aspects that go into constructing the robot. Like a painter coating the finishing touches on a meticulous oil painting, Rob types in the concluding formulas as DeadMau5 blares through his earphones. He’s in his zone.

Cecil first saw potential in Rob during their sophomore seminar. Cecil was entering simple codes into his laptop when Rob looked over and began correcting the current code he was entering.

“At first I was kind of angry that he was correcting my coding,” Cecil said. “Then I thought, ‘Okay, this kid needs to be on robotics.’”

Cecil saw a tremendous amount of drive in Rob as he worked on the robotics team. Rob cared about more than just the robot, but the people in the club as well. When Cecil and other members suggested a JV robotics team Rob simply told Cecil “No, everyone needs to be a part of this.”

Cecil and Rob quickly became friends through their time spent on robotics together. Robotics provided Rob with a social anchor, something he had missed six of his teen years because of his illness.

“It’s really a fantastic feeling getting together with friends and creating something as crazy cool as this,” Rob said.

***

Six years after his original diagnosis, Rob is in remission.

Rebecca and her husband, Rob’s stepfather, never quit seeking enhanced medication – the type of medication that would eventually allow Rob to finally begin to heal.

“We were desperate,” Rebecca said.

Through extensive online research for alternative medication and options to the current suppressants Rob was on, Rebecca came upon a medication known as Ketotifen in 2007. The medication, though not FDA approved in the U.S., became approved by Rob’s doctors for him to use in an effort for him to finally begin to heal.

“Rob is unique in the fact that he is in remission now,” Rebecca said. “Not many kids with E.G. as severe as Rob’s find relief.”

Though E.G. will always be with him, he’s now able to focus on what he loves. Currently a National Merit Finalist, Rob still looks towards the future. With colleges such as KU and KSU offering scholarships packages to him, Rob wants to one day turn his love of math and programming into a profession as an engineer, or possibly even work for a company like Google. Rob’s illness can no longer control his life.

“While I don’t want to say that I have been defined by my illness I would definitely be a very different Rob Kelly if it weren’t for that very large chapter of my life,” Rob said. “I try not to think about the individual ways it has effected me. But it has.”