I wish I had known when my son Ian was born in 2005 that a gene mutation impaired his muscle cell system. Instead, we spent years visiting specialists, wondering why our oldest struggled to hold his head up, crawl, walk and keep up with peers. Though I knew something was wrong, no one would listen. I began to think maybe the doctors were right. Reassured our oldest was healthy, we had a second child, Jackson, in 2008.

Not until Ian was 3 1/2-year-old and Jackson was six months did we finally learn the answer thanks to a doctor who did listen: Duchenne muscular dystrophy, a fatal neuromuscular disease that impairs motor skills and, by early adulthood, heart and lung function. Both of our sons have it. There is no cure.

Unfortunately, our story is not unique. Families of children with rare diseases spend years chasing a diagnosis, cycling through doctors, unnecessary procedures and emotional distress.

The diagnosis was devastating. I immediately wished we had known from birth. We do our best for their care now, but others shouldn’t have to endure the same daunting diagnostic journey.

Newborns in Arizona are screened for 61 genetic conditions. SB1076, now under active review in the Arizona Legislature, would add Duchenne to that list, providing early diagnoses invaluable to families and the state’s budget. The bill awaits approval from the Appropriations Committee. Five other states — Minnesota, New York, Ohio, Massachusetts and Illinois — have recognized the importance of newborn screening for Duchenne. Arizona lawmakers should do the same.

Despite major advances in Duchenne science, the average age for diagnosis has remained 5-years-old for decades. The condition affects about one in 5,000 boys annually, and each family endures unexpected emotional and financial upheaval. Research shows the average Duchenne diagnosis takes more than two years and costs families over $211,000 in medical expenses and lost productivity.

What if, for just a few dollars per baby, families could know and prepare from birth? That’s the reality with the Duchenne newborn screening test the FDA approved in 2019, seamlessly integrating into the heel prick panel babies already undergo.

Families can plan for their child’s needs before symptoms arise, connect with others who have firsthand experience, and make informed decisions about future care needs, like wheelchair-accessible vehicles and homes.

Critically, they can also avoid harmful activities, like certain physical therapy exercises. These programs, often state-sponsored to help children with developmental delays, can unknowingly cause permanent muscle damage for those with Duchenne.

Today, eight FDA-approved treatments exist for Duchenne, with more in development. These therapies halt — not reverse — muscle loss, so the earlier the intervention, the more function can be preserved. Early detection helps children remain mobile and independent, while allowing parents more time to budget, pursue resources, stay in the workforce and avoid unnecessary financial burdens.

Time is of the essence. Or, as the saying goes in the Duchenne community: Time is muscle.

We cannot prevent Duchenne, but we can solve years of confusion, misdiagnoses and irreversible muscle damage. We can save families from unnecessary suffering and financial hardship. We can give children more years of quality life.

SB1076 makes that possible.

Arizona’s appropriations leadership should recognize that today’s budget constraints pale in comparison to the burdens on families and the state over time. SB1076 is the right investment in Arizona’s future. 

I urge our leaders to pass it.

Amanda Teel of Peoria, Arizona, advocates for better care and access to treatments for children with Duchenne, like her sons Ian and Jackson.