In Duchenne muscular dystrophy, families often hear the phrase “time is muscle.” For Micah’s parents, it helped frame how they thought about treatment decisions for their son.
In a small town in Iowa, Micah’s days are filled with the things he loves: fishing with his grandpa, playing basketball with his brother and spending time with friends. For his parents, Michael and Michelle, those everyday moments took on new meaning after Micah was diagnosed with Duchenne muscular dystrophy.
As they learned more about how Duchenne progresses, the family began to think differently about time, and about doing what they could to slow what might come next. Knowing that acting sooner could matter, they felt both a sense of urgency and hope when they learned there was an FDA-approved, disease-modifying treatment option for Micah.
“That urgency to do something, there was no other option. To sit on our hands was not something that we could do,” Michael said.
In this video, Michael and Michelle share their family’s experience and hopes for Micah. “It was a no brainer for us,” Michael said. “I mean, we feel like we’re one step closer to a hopeful outcome.
Watch the video or read transcript below.
Transcript
Michael: I'm Michael Norby.
Michelle: I'm Michelle Norby and we have Maverick, who's 11, and we have Micah, who's 7.
We're in Greenfield, Iowa, a pretty small town. We moved to Greenfield in 2023 and that summer we had just noticed he was falling quite a bit. Pretty regularly the school nurse was calling us just concerned that Micah had fallen.
Michael: I thought he was going to go to the doctor, maybe get some physical therapy for balance issues. So that was not on our radar that something more serious would be going on.
Michelle: Micah was diagnosed in February of 2024 with Duchenne muscular dystrophy.
Michael: I mean that was a shock. You know you're filled with, obviously, a ton of questions and then really not a lot of hope. Instead of milestones being like graduating high school or going to your first dance, it’s when is he going to be in a wheelchair? Or when is he going to need breathing assistance?
We were thinking how can we push back the timeline? That was our goal immediately. So that urgency to do something, there was no other option. To sit on our hands was not something that we could do.
And then, as we continued to meet with the doctors, this was presented and it was one of the most hopeful things to be able to potentially push back those timeframes.
Michelle: April 16th, 2024. Micah received his Sarepta treatment.
Michael: Most things are in clinical trial and so just the difference of having FDA approval was huge.
Michelle: He wakes up roaring to go. Just fun loving. Just loves his friends, loves to be with people. His hobbies are going fishing with grandpa and his brother, and then basketball.
Michael: 50 years ago, there just wasn’t anything out there. And now we’re seeing treatments that are changing the course. So it was a no brainer for us. I mean, we feel like we’re one step closer to a hopeful outcome.
