May 29, 2024

Making the impossible possible

Micah Norby, 6, of Greenfield, an avid lover of The Incredible Hulk, takes on treatment for Duchenne muscular dystrophy with courage and a smile.

A Greenfield family facing a trial no one would ever want to go through has been able to handle it head on because of the hope and peace they have and the community of people they have rallying behind them.

Micah Norby, 6, the son of Michael and Michelle Norby, was diagnosed Feb. 9 with an aggressive form of muscular dystrophy known as Duchenne muscular dystrophy (DMD).

“You type it into Google and it’s devastating that way to see,” Michelle said. “To hear from [doctors] to see how far they’ve come in treating it, it gives us hope, but nothing’s a cure.”

Mutations in the dystrophin gene in DMD patients leads to progressive muscle fiber degeneration and weakness. DMD most commonly affects boys in their early childhood like Micah. Life expectancy in patients is commonly low — many times in their 20s and 30s.

Following Micah’s diagnosis, the Norbys were referred to the University of Iowa Hospitals and Clinics. It is a center for excellence in treating the disease. There, a team of medical professionals have been standing with the Norbys throughout their journey, from discovery of the diagnosis to learning how it is affecting Micah specifically.

“There are less than a dozen centers of excellence in the United States,” Michael said. “You have to have a plethora of different specialists in that department to qualify for that.”

The treatment Micah received was gene therapy. It doesn’t reverse or cure the disease, but it can bring promise in stabilizing the advancement of symptoms in patients.

Micah was denied for the therapy the first time, but appeals by the medical team at the University of Iowa were successful so he could get the treatment he needed April 16, which is a day before he turned 6. It is only FDA approved for 4 and 5-year-olds.

The therapy meant the Norbys had to spend two weeks in Iowa City and Micah wasn’t able to be in school for that time. Now, the Norbys have weekly checkups with doctors to see how things are going.

Complications from the treatment have been few thus far. Micah is the first child to receive it in a non-trial form in Iowa. The Norbys had to isolate before and after the treatment so they weren’t sick, or Micah’s chances of getting the treatment would have been compromised. Micah’s older brother, Maverick, 9, who is in fourth grade at Nodaway Valley, wasn’t able to be with his family while much of this was happening.

“This drug (gene therapy) is to give his muscles more time to develop. It’s a miracle drug,” Michael said. “It’s not a cure, but when he’ll be in a wheelchair, when he’ll need breathing assistance, when he’ll need heart medication, we’re talking about pushing some of that back. They don’t know the full potential because the drug has only been in trial for five years.”

When Micah wasn’t able to be in school, he was able to video chat with classmates to stay connected. The support Nodaway Valley has given the Norbys has been very much appreciated.

So has the support from Cornerstone Fellowship Church, which Michael pastors. He has held that role since May 2023. The Norbys came to Greenfield from Radcliffe and love the warm atmosphere of the people of the community, and having a grocery store right down the street. The congregation started a GoFundMe page and people there have flooded the Norbys with support, prayers and kindness. Those who don’t even know the Norbys have been drawn to their story and the church because they read it on social media.

Nodaway Valley Elementary School had t-shirts made that are green, the color for muscular dystrophy awareness. They say “Micah Strong” on the front. A change drive was also held by the school.

Nodaway Valley track runner Joanna Larson, who was the Norbys’ nanny last summer, dedicated her track season to Micah, decorating her shoes in dedication to his cause.

A Bible verse referenced on the Micah Strong t-shirts talks about having joy amid trial. The Norbys say that while their road has been difficult, the sole reason they’re able to have joy is simple and very evident.

“We talk a lot about Micah Strong, but the biggest thing is Jesus Strong. Jesus is the one making the impossible possible,” Michael said. “He’s who we rely on more than anybody.”

Caleb Nelson

Caleb Nelson

Caleb Nelson has served as News Editor of the Adair County Free Press and Fontanelle Observer since Oct. 2017. He and his wife Kilee live in Greenfield. In Greenfield and the greater Adair County area, he values the opportunity to tell peoples' stories, enjoys playing guitar, following all levels of sports, and being a part of his local church.