As Katie Parker began filming her son while he prepared to take three hops on his right leg during a therapy session, he became frustrated when he stumbled after one or two hops. Then Colton Rahn recalled his inspiration.
“He said, ‘I’m doing this for Mikey,’ ” said Jason Rahn, Colton’s dad.
Hop. Hop. Hop. He did it.
Colton, a 9-year-old from Tuscola, has defied doctors’ expectations since developing cerebral palsy shortly after his birth. He has spent most of his life working to improve use of his right arm and leg in physical and orthopedic therapy sessions.
But the disorder hasn’t stopped him. It’s hard to say it has even slowed him down much.
Colton grinned when asked about Illinois football players, especially his favorite player, receiver Mike Dudek. Dudek’s persistence to return to the field from knee injuries during his career motivates Colton.
“He’s cool,” Colton said sheepishly.
Really, Colton has served as an inspiration to Illinois fans and players who have connected with him over the last few years.
“Colton was an inspiration to me the moment I met him,” Dudek said in a statement the Illinois athletic department provided. “Seeing what he goes through on a daily basis, always with a smile on his face, shows the type of warrior he is. We all love Colton and are thankful he is such a big fan of our team and program.”
Colton has attended Illini fan days and a few games. He became the star of a biddy basketball game last year when Illini players surprised him by showing up in droves to cheer for him — and watched him make an unscripted game-winning basket, his first of the season.
His bedroom is decorated with autographed Illini gloves, jerseys and posters. It’s not uncommon to see Illini players wearing #ColtonCourage bracelets.
This summer, Illinois players Reggie Corbin, Del’Shawn Phillips and Justice Williams volunteered to coach a flag football team that Colton’s parents organized after finding no nearby teams for their son to safely enjoy his favorite sport. Corbin was impressed as Colton played center, able to use only his left hand in shotgun formation.
“He was so positive,” said Corbin, a junior running back. “He didn’t complain. He came to practice every single day and was the first person there. He was the most productive kid in the entire league. Out of 100-and-something snaps, there was only one bad snap and the ball was wet. He’s a normal kid. He never expected special treatment. He just kept going.”
Colton was stunned when his dad told him he had tickets to attend Friday night’s Illinois-Penn State game at Memorial Stadium.
Jason Rahn said he hesitated to accept the offer from a fan because walking the ramps and scaling the steep stairs to the upper deck will be a struggle for Colton, who walks with stiffness in his right leg and can tire easily. Ticket prices prevent the family, saddled with stacks of medical bills, from attending most games.
But Colton is pumped to watch the Illini in person.
“To say he is excited is a understatement,” his father tweeted. “Keeps asking if he is going to see his ‘guys’ after the game.”
‘You’ve got to work for it’
Attending football games and playing sports weren’t part of the future doctors initially described when Colton was diagnosed with cerebral palsy, a disorder of movement, muscle tone or posture caused by damage to the developing brain.
“At 14 months old, he didn’t walk, didn’t talk, he would only army-crawl on his elbows,” Parker said. “If you had him standing, he could stay there holding something. They said this is what we should expect: ‘He won’t walk. He won’t talk. He won’t feed himself.’ ”
That answer was unacceptable to Colton’s parents.
“I said, ‘What other options do we have?’ ” Parker said. “I don’t believe in limiting people. I never have, and Colton’s only made that belief stronger.”
Progress would have been unlikely without the fierce persistence of his parents and Colton’s own determination. Even to get Colton diagnosed took unwavering perseverance as doctors would shoo away Parker’s concerns as just the pestering of an overly paranoid new mother.
But she had seen the signs since shortly after Colton’s birth in January 2009.
After a pregnancy with no complications, Colton wouldn’t latch to breastfeed the night after he was born, and nothing soothed him. As he grew, his parents noticed his refusal to use his right arm. By eight months, he rolled on his side to hold his bottle with his left foot and left hand.
“It was still: ‘You’re the crazy mom. It takes time,’ ” Parker said doctors told her. “I’m like: ‘Listen to me. I’m the mom. I‘ve never seen a kid do this. There’s something not right here.’ ”
When Colton was 1, she took him to an orthopedic clinic hosted by the Elks where a doctor almost immediately told Parker he suspected Colton had cerebral palsy.
The family learned that Colton had a stroke around the time of his birth and was told “half his brain is dead” because of a blood clot on the left side. Appointments with neurologists and many tests followed. Parker battled red tape, filled out long insurance forms and dealt with dismissive medical professionals to enroll Colton in physical and occupational therapy.
Shortly before he turned 2, they learned he needed glasses. They also saw him take his first steps.
Colton’s parents accepted the fate that life would sometimes be harder for their son. But they vowed early not to set low expectations for him.
They resist the urge to coddle him when he struggles, knowing he has the resolve and ability to achieve a task. It can be heartbreaking, but the bigger picture — adult independence, physical progression, raising a strong and resilient child — is always on their minds.
When he wanted a bottle on a table at a campground, Parker told her then-toddler he had to go grab it himself.
“You’ve got to work for it,” she said. “He was screaming at me. And then he just walked straight across to get it, like multiple steps in a row. We all cried. Nobody else thought it would happen.”
During the summers when Colton was 7 and 8, he was fitted with a constraint cast — one orange, one blue, of course — that eliminated use of his left hand, forcing him to work on developing his right.
Parker got the idea for the cast from reading about stroke patients.
Colton is naturally right-handed but relies on his left. Even when he celebrated after games, his parents and Illini coaches would remind him to high-five with his right.
He wears an eye patch for several hours — including during gym class, which bothers him — to strengthen his eye. He has experienced at least two seizures, including a more severe one in February that negated some of the progress he had made in therapy, and takes medication.
“I was always taught pain is weakness leaving your body,” Parker said. “It’s going to suck, but you’re going to overcome it.”
High toll, small victories
When Colton expressed interest in sports, his parents encouraged him. They created the 71-member flag football league this summer and refereed every game for Colton’s team.
Parker said she has taught Colton not to believe in the word “can’t.”
Doctors have proposed various surgeries for his eye, arm and leg, but the family hopes other methods will work before putting him under anesthesia, which can pose greater risks for someone with Colton’s medical issues. They’ll learn early next month whether the eye patch has worked or if surgery is recommended.
The emotional and financial tolls are exhausting on his parents, who also have a 6-year-old son.
The therapy sessions and doctor appointments require trips in one direction to Carle Foundation Hospital in Urbana and in another to Sarah Bush Medical Center in Mattoon. Parker used up all of her vacation at previous jobs and frequently worked overtime to take Colton to appointments.
She said one boss told her she had to choose between motherhood and working, so she quit. She later took low-paying jobs such as working at a gas station but now works in the scheduling department at Carle. Jason Rahn works as a territory salesman, driving around central Illinois.
Medicine, eye procedures, therapy, gas to get to appointments, corrective shoes, adaptive jeans that button more easily — it all adds up.
The couple said they had a car repossessed as they struggled to pay off mounting medical bills. Parker said she has lost friends because of her lack of spare time. She and Rahn haven’t had a date night in a year and a half.
“People don’t understand what two working parents give up,” Rahn said. “You literally give up your credit and vehicle to make sure they get what they need.”
But there are moments they can claim as little victories, validating their belief in persistence.
When Colton climbs the jungle gym at the park, cautiously but with the same enthusiasm as any 9-year-old. When he runs on the soccer field. When he gets off snap after snap in his flag football league, refusing to take breaks.
And when he walks into Memorial Stadium on Friday night to see “his guys” play, that will be another victory for Colton.
“ ‘Colton Courage’ — it’s become this mantra,” Rahn said. “He’s living in this world that isn’t made for him. He’s dealing with it, having the courage to go through it.”
“We’ve told him,” Parker said, “ ‘Don’t give up. The more bull-headed you are, the further you’re going to make it.’ ”
“The disability,” Rahn added, “doesn’t define the child.”
Twitter @sryantribune
