“Look mom, I’m like Spiderman!” Charlie Krupka said during a recent physical therapy session.
Charlie rolled around a room at Easter Seals DuPage and the Fox Valley Region in Villa Park on an oversized exercise ball, telling jokes.
“What do you call a sleeping bull? A bulldozer!”
He spends the afternoons at Whittier Elementary in Wheaton doing physical therapy activities such as walking, squats and using muscle-stimulating equipment. The long days can take their toll on a 6-year-old, Charlie’s mom Tracy Krupka said.
The regimen sounds more like that of an athlete than a child who, only a few months ago, was largely confined to a wheelchair.
Charlie was born extremely premature, Tracy said, at only 24 weeks old. Tracy suffered a rare placental abruption that caused bleeding and cut off Charlie’s oxygen, requiring an emergency delivery.
When he was born, Charlie weighed only 1 pound, 15 ounces, Tracy said, and was so small that he could fit in her husband’s hand. He was eventually diagnosed with spastic quadriplegic cerebral palsy, among other maladies.
The prognosis was not good, Tracy said.
“The doctors told us to ‘just try and enjoy him,’ ” she said. “I didn’t know what that meant.”
He was cleared to return home after 97 days of intensive care, but the health problems continued.
“I was very lonely,” Tracy said. “I felt like nobody knew what happened in my world. It’s hard for other people to understand, but you can’t take your sick kid to play dates, because if they get a cold it sends them to the hospital.”
Both mother and son found help at Easter Seals DuPage.
Charlie “missed all his milestones,” Tracy said, but still made progress. He didn’t speak until age 3 – “Though once he started talking, he never stopped,” Tracy said. He got his first wheelchair the same year.
Tracy said that meeting other parents through the program who were smiling and laughing gave her hope that “there’s happiness ahead.”
Charlie now is enrolled in classes with his peers and is a ball of talkative energy.
Still, Tracy said, he was often unhappy.
“He said things like ‘I want to play soccer’ and started to see all these things he couldn’t do,” Tracy said. “He said ‘I want to be like other kids.’ ”
But when the Krupkas learned about a surgery called selective dorsal rhizotomy that could help Charlie walk, they were torn. The procedure involved exposing and manipulating the patient’s spinal chord. A mistake or misstep could leave Charlie fully paralyzed.
“We’re making this decision, but he has to live with his body,” Tracy said. “We took a leap of faith, and, ultimately, it turned out perfectly.”
Charlie’s muscles, once stiff as a board, are looser since the surgery last April.
Charlie said that his body “feels like new.”
After months of therapy, he was able to walk into Easter Seals DuPage using a walker without assistance for the first time a few weeks ago.
“Now that he is learning to walk, that changes the entire family dynamic,” said Theresa Forthofer, the CEO of Easter Seals DuPage.
Tracy said that, while the surgery is not for everyone, the future looks much brighter for her son.
“The level of technology [for helping those with disabilities] is great today, but when I think of the long-term potential he has, it is so much higher,” she said.
Tracy sat next to Charlie as his therapist helped him with the exercise ball. He looked back at her for encouragement, even as he struggled and said he couldn’t keep going. As he rolled closer to her, they extended their hands for a high five.
As their hands touched, Charlie said, “I’m a superhero and you’re Super Mommy!”