1 in 5,000
Newborns affected by Duchenne muscular dystrophy
Greenfield Kid Captain beats the clock to receive new gene therapy
Micah Norby was the first child in Iowa outside of clinical trials to receive gene therapy for Duchenne muscular dystrophy.
Micah Norby, the seventh Kid Captain of the 2025 Iowa football season, appeared to be healthy until he started frequently falling around age 5 and seemed to lag behind his soccer teammates.
“Once he was in school, the real concern came up, because his falling became more frequent,” Micah’s mother, Michelle Norby, says of his early childhood. "The nurse was calling us once a week, or sometimes twice a week, to report that he had fallen.”
His mother also noticed that Micah struggled getting up from the floor and couldn’t jump like other children his age could.
Their local doctor referred the family to a pediatric neuromuscular doctor who performed a physical evaluation and suggested genetic testing, which led to a diagnosis and a trip to University of Iowa Health Care Stead Family Children’s Hospital.
“We got the results in two weeks, and that determined he had Duchenne muscular dystrophy,” Michelle says.
Discovering the options
Michelle Norby and her husband, Michael, had never heard of Duchenne muscular dystrophy before their son’s diagnosis. The genetic disorder is characterized by progressive muscle degeneration and weakness, in which children lose their ability to walk and have shortened lifespans.
Though rare, Duchenne muscular dystrophy affects mostly boys and occurs in about one in 5,000 newborns. Duchenne is more severe and progresses more quickly than many other forms of muscular dystrophy.
Because of this need for such specialized care, Micah made his first visit to Stead Family Children’s Hospital in February 2024.
“We got his results on a Friday and by Monday, we got a call from the team at the children's hospital,” Michelle Norby says. “They immediately fit us in for a next day appointment to discuss his diagnosis and treatment plan. What impressed us the most was how they were willing to see us right away during an overwhelming time.”
Michelle Norby says they were treated as individuals, “not just a number.”
“We really didn’t know what to expect,” she says of that first visit. “But when we got there, we met with a team of doctors and nurses, and they did a physical assessment of him. We were there for a whole day just learning about the disease, different treatment plans, upcoming possible medications, and then we began talking about gene therapy.”
A ticking clock for a new therapy
The family was told that gene therapy could potentially help replace the gene that was malfunctioning in Micah’s body.
Duchenne muscular dystrophy limits the body’s production of a protein called dystrophin which protects muscle fibers from breaking down. Without dystrophin, muscles degenerate over time and cannot function or repair themselves properly.
Micah’s parents were told the gene therapy, designed to slow progression of the disease, could help the body produce dystrophin.
That March, Micah's parents decided to proceed with gene therapy, but the clock was ticking - the approved therapy had an age limit.
“The gene therapy he needed was approved for children under 6 years old and it cost $3 million,” Michelle Norby says. “Micah's birthday is April 17, and we were already into March when we decided to move forward with the treatment.”
The family’s insurance initially denied the therapy, but the care team wrote a letter to appeal the decision and express the urgency.
“They did accept the appeal then,” Michelle Norby says, but a new complication surfaced. Micah had to be healthy to receive the infusion, and he unexpectedly became ill with a viral illness. The treatment was delayed, but his medical team pledged to do whatever they needed to make it happen.
"We feel like they’re there for us. They’re quick to get back to us when we have a question, and they’ve gone above and beyond. They’ve given us a lot of hope."
Michelle Norby
Micah’s Mom
Finally, one day before his sixth birthday, Micah was deemed healthy enough to receive the one-time infusion - making him the first boy to receive the treatment in Iowa outside of clinical trials.
He suffered nausea and was monitored for two weeks in the hospital before going home. Micah has also experienced weight gain as a side-effect of his other medicine used to treat Duchenne muscular dystrophy.
His condition is now considered stable.
“Some things have improved,” Michelle Norby says, “He could never jump with both feet off the ground, but he can do that now. He is hardly falling at all.”
A sign of strength
Just weeks after the infusion, “in the midst of everything else,” Michelle Norby says, the town of Greenfield, where they live, was hit by a devastating tornado. The Norby family’s home was spared, but they and everyone else in the community shifted their focus to tornado recovery.
Students were unable to finish the school year, and Micah’s parents decided to have him repeat kindergarten.
Now 7 and in first grade, he enjoys swimming, fishing, and using his remote-controlled car.
“Due to his condition, he will never be able to play on any football or sports team,” Michelle Norby says, “But he’s a very happy boy, always smiling. He goes with the flow. He never complains. It shows his strength.”
Micah’s health care team continues to monitor his condition.
“Gene therapy is still new, so we aren't sure how long Micah's muscles will stay strong,” Michelle Norby says, adding the family appreciates the support offered by his care team. “We feel like they’re there for us. They’re quick to get back to us when we have a question and they’ve gone above and beyond. They’ve given us a lot of hope.”
Photos from Kids Day 2025
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