Micah Norby’s favorite colors are black and gold. His favorite sport is football. His favorite animal is a hawk. It’s almost like he was meant to be a University of Iowa Stead Family Children’s Hospital Kid Captain. 

But Micah’s journey nearly took a very different turn, and one more day could have changed everything. 

Micah’s journey to wearing the Kid Captain jersey began when he was just five years old. His parents noticed him being a little more clumsy than usual, falling frequently and not keeping up on the soccer field. They took Micah to a local doctor, searching for answers. 

“We thought it was just a phase,” Micah’s mother, Michelle Norby, said. “Maybe he’ll grow out of it. And then he was falling several times a week.”

Months later, when Micah was able to get an appointment with a pediatric neurologist in Des Moines, Iowa, the Norby family learned Micah had Duchenne muscular dystrophy (DMD), a disorder of progressive muscular weakness. After learning of the diagnosis, the Norby family turned to the Stead Family Children’s Hospital.

“They had said we weren’t going to hear from the [Stead Family Children’s Hospital] for up to six months,” Micah’s father, Michael Norby, said. 

But on the next business day, they received a call.

“On a Friday, we got the results from the neurologist in Des Moines,” Michelle said. “On Monday, we got a call from the [Stead Family Children’s Hospital] and they said to come in tomorrow.”

After arriving in Iowa City, doctors informed the Norby family that Micah was already weaker than most boys his age with the same disorder. But Michael and Michelle felt confident he was in the right hands. The University of Iowa is the only medical center in the state named a Muscular Dystrophy Association Care Center.

Though there is no cure for Duchenne muscular dystrophy, Stead Family Children’s Hospital staff presented a beacon of hope to the Norby family: new gene therapy designed to slow the progression of the disease. The treatment was only approved for four and five-year-olds. 

“Nothing reverses what’s already taken place,” Michael said. “All of it is to prolong what is to come. We were hoping we push back this timetable and give him more of a fighting chance.”

Just one day before the cutoff for treatment, the day before his sixth birthday, Micah became the first boy to receive the gene therapy treatment at the Stead Family Children’s Hospital. The procedure was about two hours long.

The Norby family still recalls memories with Micah’s care team, highlighting the straightforwardness and urgency displayed by Dr. Katherine Mathews.

“We’ve had some of the worst days of our lives through this process,” Michael said. “We appreciate the University of Iowa so much.”

Nearly 18 months after his treatment, Micah can be found wrestling around with his brother, enjoying recess, and cheering on the Green Bay Packers. He continues to return for appointments with the Stead Family Children’s Hospital staff for monitoring.