Wapello Kid Captain’s bones spontaneously fracture from ultra-rare disease
A high five once broke her arm. Now, Kid Captain Harper Atkinson finds strength and support at Stead Family Children’s Hospital.
Having dealt with spontaneous fractures since she was 2 years old, Harper Atkinson may be the only person in the world with her specific bone disease.
Harper, the ninth Kid Captain of the 2025 Iowa Hawkeyes football season, and her twin brother, Knox, were born in 2015 at University of Iowa Health Care Medical Center.
“When we found out we were having twins, we went to the university hospital, because we knew it could be a high-risk pregnancy,” their mother, Miranda Atkinson, says.
Both newborns spent two weeks in the Neonatal Intensive Care Unit at the UI Health Care Stead Family Children’s Hospital, and while Knox was eventually diagnosed with cerebral palsy, Harper seemed healthy.
“She had no indications of health problems or disability until she was a toddler,” Miranda Atkinson says. “Her milestones were delayed, but still within what you’d expect.”
Harper could crawl, although her mom described it as “very unique,” describing how Harper would scoot along, rather than using all four limbs.
“In hindsight, we now know it was because her legs hurt,” Miranda Atkinson says. “She started walking at about 19 months old, but it was very limited, and by the time she was 2, she had her first femur fracture.”
Spontaneous bone fractures
Harper’s unique medical journey began with an unsettling moment for any parent. While at the park, Harper suddenly dropped down and started crying, seemingly without a cause.
“It was a spontaneous fracture,” Miranda Atkinson says. “It just happened.”
As she consoled her daughter, the young mother ran her hand along Harper’s leg and found a deformity, which emergency personnel later confirmed was a fracture.
The family quickly drove Harper an hour away from their Wapello home to the Stead Family Children’s Hospital. The care team quickly began assessing the 2-year-old girl, including an X-ray showing what looked like a tumor or lesion at the fracture site.
Harper was admitted to the hospital and given a full-body MRI that showed multiple lesions throughout her body, mostly on her arm and leg bones.
“The locations of these lesions make her susceptible to these fractures,” her mother, Miranda Atkinson, says. “She experienced that first fracture with no trauma.”
“These lesions are like a pocket of really porous or almost spongy bone,” Harper’s dad, Nate Atkinson, adds.
Only case in the world
Tests were run to ensure Harper didn’t have cancer. While similarities to other conditions were found on national and international databases, none of the known diseases quite fit with Harper’s symptoms.
“At this point, she’s considered undiagnosed and the only case in the world that they know of,” Miranda Atkinson says, calling the condition an undiagnosed metabolic bone disease. “The hard thing with Harper is that we don’t know necessarily how to ‘fix’ her, because there’s no diagnosis. We manage her with medication and surgeries, but there’s no way to really help or fix, if you don’t know what to fix.”
Her health care team helps manage Harper’s pain through treatments such as acupressure and aromatherapy along with coping mechanisms from a psychologist. She sees a geneticist in addition to about a dozen other specialists.
Harper also has craniosynostosis, in which fibrous connections between the bones of the skull fuse prematurely, and Chiari malformation, a condition in which brain tissue descends into the spinal canal.
Since her first break at age 2, Harper has since had more than 35 bone fractures, resulting in 11 surgeries for broken bones, multiple admissions, and other procedures over the past eight years.
Leading a full life
Subsequent MRIs have shown the lesions are worsening, Miranda Atkinson says, “so the disease has proven to be progressive.”
Though Harper still experiences fractures, telescoping rods surgically implanted by Holt have lessened the chances of her bones “snapping in half,” her mother says, which has been a noteworthy improvement.
Now 10 and in fourth grade, the Wapello girl loves school, horseback riding, and kittens. She also plays the piano and is a good singer.
While Harper can walk, she uses a wheelchair for longer distances. Once she stops growing, she will eventually need hip reconstruction surgery, which will take place at Stead Family Children’s Hospital.
“Even if we didn’t live an hour away, the children’s hospital is where we would choose to go,” Miranda Atkinson says. “With a chronic lifelong condition, it’s important to us that she receives great care through the entire journey, which we have so far, and I am confident we will continue to.”
Photos from Kids Day 2025
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