Micah Norby - Duchenne Muscular Dystrophy

Dear Friends and Family,

We would like to let you know about some news about our family. After we moved to Greenfield, Iowa in May for Michael’s new pastoral position at Cornerstone Fellowship Church, we began noticing that Micah (our 5-year-old) was falling a lot. We went to our local doctor and after some lab work we werereferred to a pediatric neurologist in Des Moines. During that appointment Micah had a genetic test. On February 9th, 2024, our family was given the results of the genetic test, and it was confirmed that he has

Duchenne Muscular Dystrophy. On February 13th, we headed to the University of Iowa Stead Family Children's Hospital to meet with a team of neuromuscular doctors, nurses, and physical therapy. We found out that Micah has fast progressing muscular dystrophy and he is already weaker than most boys his age that have Duchenne.

Duchenne muscular dystrophy is a genetic disorder characterized by the progressive loss of muscle. It is a multi-systemic condition, affecting many parts of the body, which results in deterioration of the skeletal, cardiac (heart), and pulmonary (lung) muscles.

After being denied by our insurance, Micah's appeal went through, and he was approved for Gene Therapy. Gene therapy helps boys with Duchenne produce dystrophin and extend their years of ambulation. This is not a cure, but it is a breakthrough treatment. The date is set for April 11th in Iowa City. The infusion itself will take about 1 hour. However, we will need to stay near the hospital for 2-3 weeks (in isolation) in case Micah has any bad side effects, since we live close to 3 hours away. He will have a lot of labs initially to monitor his liver and other organs that may be affected. After the extended

stay, we will need to return to Iowa City once a week for monitoring and labs.

As we navigate the next few months (and years) we are looking to God and trusting him through our trials and weakness. None of this is a surprise to God. As we've done our research, we've understood how meaningful each day and year ahead with Micah is and will be. We are doing what we can to explain everything to the boys. Micah sometimes will ask “when I am in a wheelchair will I be able to do... ?” Other conversations we have are “when I grow up will I be able to...?” Or “if I’m in a wheelchair how will I be able to go down to watch the tv in the basement?” Or “when I grow up, I’m going to drive a Lamborghini and work at Caseys”. Sometimes the conversation leads to spiritual things like “I’m going to be okay because Jesus lives in my heart”.

Micah is so loved in our church, community, and family; we know God is going to use his life to reach others for His glory.

Verses that have comforted us: Deuteronomy 29:29, 1 Peter 1:6-9, Isaiah 55:8-9

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