When CJ was born, he was already making an impression.
Courtney remembers working a long shift on the PCU floor before going into labor. CJ arrived three weeks early, strong-willed from the start. There were small details that stood out, like his slightly larger head, but at the time, he was simply their baby. They named him Colton, giving him two middle names to honor both grandfathers, Jordan and Ray. From the very beginning, he has been surrounded by love.
It wasn’t until CJ was about two months old that Courtney began noticing café-au-lait spots on his skin. By his four-month well visit, he had 17. That was the first time a pediatrician mentioned the possibility of neurofibromatosis (NF), and from that moment on, everything shifted.
“It felt like this life I had planned for him, running around the yard, playing sports, was suddenly going to be harder to reach,” Courtney shared. “I felt confused about what the condition was, and honestly, I felt depressed. Like I had done something wrong.”
As a nurse, Courtney understood the language being used. She could break down the terminology, explain what doctors meant, and make sense of the medical side. But that knowledge came with weight. She quickly became the one everyone turned to for answers.
“It’s overwhelming being the point of contact for everything,” she said. “There’s so much misinformation out there to correct. I even went to my local library to research, like any medical professional would, and all I found was a short video and two books on the Elephant Man. I later learned he likely didn’t even have NF. Seeing that, and even seeing language like ‘freak,’ was heartbreaking.”
Like many parents, her first searches brought up the most extreme cases. The kinds of stories and images that are hard to unsee, and even harder not to carry with you.
“We struggled to understand the condition because it looks different for everyone,” she said. “We were trying to figure out if anyone in our family had signs of this, while also fielding questions from others. People were asking if CJ would be covered in neurofibromas like they’d seen on TV. It was overwhelming. We were trying to fight misinformation and answer questions while we were still processing it ourselves.”
CJ began seeing specialists early. His ophthalmology appointment at six months came back clear. Genetics and dermatology appointments followed, each one adding another piece to the puzzle. Then, in August 2025, they received confirmation. CJ had NF1.
“It felt like I could finally take action,” Courtney said. “I didn’t feel like I was overreaching anymore by trying to learn everything I could. Getting the diagnosis gave legitimacy to what we were seeing. We could finally give it a name.”
It was a spontaneous case, with no family history on either side.
CJ is now 18 months old, and in that short time, Courtney and her husband have had to learn fast.
“I spent hours researching, reading articles, medical dictionaries, anything I could find,” she said. “I talked to coworkers, hematologists, oncologists, asking if they’d heard of it. I was trying to understand everything while sitting there with my four-month-old son, who was just smiling at me. I had to sit down with my husband and explain what this diagnosis could mean.”
One of their first calls was to NF Midwest.
“The packet we received helped us understand what was going on,” Courtney said. “It answered so many of our questions.”
That information did more than educate them. It helped them take action. Through what they learned, CJ qualified for additional state resources, and they began to feel more confident navigating conversations with both family and providers. It also gave them the tools to educate others, which has become an important part of their journey.
CJ’s care now includes a team of 12 specialists, along with ongoing physical therapy to support low muscle tone. Some weeks are filled with appointments, evaluations, and follow-ups. It’s a lot for any family to manage, especially with a child this young.
And yet, CJ moves through it all in his own way.
“He is a trooper,” Courtney said. “He lets everyone examine him. He doesn’t mind. He’s just the happiest, go-lucky little boy.”
For Courtney, the emotional side of this journey has been just as complex as the medical one.
In the beginning, it was terrifying. The first appointment where NF was mentioned happened without her there, which meant she had to process everything after the fact. She turned to research, trying to understand what this could mean for CJ’s future, but much of what she found only added to the fear.
“As a mom, you tend to blame yourself,” she said.
Her husband experienced it differently. Coming from outside the medical field, he was suddenly thrown into a world filled with unfamiliar terms, specialists, and unknowns. Together, they had to learn quickly, leaning on each other as they tried to make sense of it all. Supporting each other became essential.
Courtney’s husband Wes shared, “My wife is usually the one handling ER visits and hospitalizations. My role is to support her and be the best dad and husband I can be.”
They found community through NF Midwest and connected with other parents walking a similar path. Hearing real experiences, not just worst-case scenarios, helped ground them. It gave them perspective, and eventually, confidence.
“We’re knowledgeable now,” Courtney said. “We’re able to educate others, like CJ’s grandparents, his teachers, and our friends.”
That sense of purpose is what led them to the Walk for NF.
Courtney first learned about the walk late last year. After participating in events supporting other causes, like Alzheimer’s and cancer, this one felt different.
“This time, we’re doing it for CJ,” she said.
They created a team called CJ’s Dino Rompers, a name that feels just as joyful as it sounds.
CJ may be small, but his personality is anything but. With a head slightly larger in proportion to his body, his family jokingly calls him their little T-Rex. He loves dinosaurs and lights up when he sees Rex from Toy Story. He even has his own version of a roar that the family loves to hear.
CJ’s Dino Rompers is already gaining momentum, raising over $1,000 in just the first few weeks. For Courtney, it’s not just about the number. It’s about showing up for CJ, sharing their story, and helping the next family feel a little less alone at the beginning of their journey.
With more than a month to go until the Walk for NF on May 30, their team continues to grow, along with the community surrounding them.
If you’d like to follow along or support CJ’s Dino Rompers, you can visit their team page here: https://give.nfmidwest.org/team/803627
For this family, the walk is not just an event. It’s one more way they are moving forward, together!
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