Nicholas’s Story: Cerebral Palsy
Meet Nicholas
When Nicholas was diagnosed with cerebral palsy (CP) at the age of 2, his parents were told he would likely never walk on his own. Now, at 17, Nick is not only walking but competing as a para-athlete in track and preparing for college and a career in broadcast journalism.
“What you have to understand about Nicholas is that he’s never been happy with the word ‘no,’” said Cameron, Nick’s dad. “So we’ve always told him, ‘You can do anything anyone else does, you just have to figure out how’ — and he does.”
An unbelievably tough kid
Cerebral palsy can look very different for each individual and typically impacts movement and posture. As a baby, Nick’s symptoms were fairly mild. One of the first things that his parents noticed was that they’d put him to bed in one spot, and he’d wake up the next morning in the exact same position — fairly unusual for most wiggly babies. He also had some stiffness in his legs as he was learning to stand.
A Children’s Mercy team diagnosed Nick with CP and connected the family with resources like speech, occupational and physical therapy. Nick also had regular visits to the Children’s Mercy Orthopedic Clinic to monitor his movement, growth and development.
Kathryn Keeler, MD, Department Chair, Orthopedic Surgery, has been Nick’s orthopedic surgeon since he was 6 years old. “Nick has unbelievable mental toughness,” said Dr. Keeler. “When he first came to me, he was primarily using a wheelchair and a reverse walker. He went through a lot, surgery-wise, to correct the alignment of his hips, legs and feet and give him better mobility outside of a wheelchair.”
Nick has had five surgeries over the years, and each one felt like a mix of progress and setbacks. “Being down for three months after surgery was like starting over, but he was committed,” Cameron recalled. “Nick has a lot of drive on his own. His mom and I do our best to assist, but he’s the one who has made up his mind to go to it and put in the work.”
School supports
As Nick gained strength after his first major surgery between 2nd and 3rd grade, his parents realized that he was spending most of his school days in a wheelchair because of the time it took him to navigate the building on crutches. But that was not helping him progress towards his goal of walking more independently.
Cameron took action: “I made a phone call to the school district and mentioned a little thing called the Americans with Disabilities Act ... Next morning, I got a call from the superintendent saying, ‘We would love to have Nicholas on crutches more often!’” Now, as a high school senior, Nick actively participates in his Individualized Education Program (IEP) meetings, and his school support team collaborates with him on helping him achieve his academic, athletic and personal goals.
Life with fewer limits
Nick has always been clear about his vision. “I want to have more physical ability and live a life as close to a physically abled person as my CP would allow,” he said. This has involved a team of support professionals — including physical and occupational therapists, teachers, coaches and family members — and an incredible amount of hard work on Nick’s part.
“Nick and I made an agreement,” Cameron explained. “I would make sure he got to all his appointments, and he would work hard while he was there and at home.”
Nick has met his end of the bargain and then some. When Dr. Keeler asked him to walk down the hallway of the Orthopedic Clinic to assess his gait, Nick chose the longest hallway and made multiple trips. Together with his track coach, he came up with new exercises he could do in the gym during the off-season to strengthen his arm muscles for his racing wheelchair.
Dr. Keeler emphasized how this dedication to physical therapy and training has paid off for Nick: “As someone who works with a lot of kids with CP, the medical focus is often on spasticity. But I had the good fortune to work with someone in my fellowship who noticed lots of CP symptom management was related to addressing muscle weakness, and so now we emphasize the importance of strength training.
“Nick is a great example of that,” added Dr. Keeler. “Sports have really lifted him up. He is super disciplined, and it shows.”
Going to state track meets with his teammates has been one of the highlights of Nick’s high school experience. In addition to competing alongside both able-bodied and para-athletes, he gets to hang out with his friends and goof off a little. (Just ask him about the time his friends got stuck in a hotel elevator, and he had to call the coach to bail them out!)
Next steps, on his own
In preparation for college next year at the University of Central Missouri, about 30 minutes away from his home in Higginsville, Mo., Nick is filling out every scholarship application he can find. “I’m really excited to be on my own,” he shared.
A self-taught electric guitar player, he practices pentatonic scales to strengthen his left hand and firmly believes that ’80s and ’90s heavy metal is the best genre. “Metal is faster blues, but with soul,” he declared.
Nick plans to combine his passions for music and people into a double major in Communications and History. His goal is to become a radio DJ, podcaster or something in the broadcasting realm and someday have a family of his own.
“I wouldn’t be who I am today without my mom and dad,” Nick said. “Family is very important for me. My dad always said you never know true love until you have a kid of your own, so I want to experience that.” With the dedication Nick’s shown to reaching his goals already, these big dreams are definitely within his reach.