My husband and I knew something was wrong with our son, Brecken, when he crawled and walked late, tripped and fell often, and struggled on stairs.

His pediatrician dismissed our concerns. We were told that Brecken might not be a marathon runner, but he was fine. Thankfully, our instincts suspected otherwise. After years of questioning specialists, a neuromuscular doctor finally diagnosed Brecken with Duchenne muscular dystrophy just weeks before his third birthday.

Duchenne, a fatal, degenerative neuromuscular disease, affects one in every 3,500 newborn boys but is not one of the 50 inherited and congenital disorders doctors test for at birth. I am proud my home state, Minnesota, recently joined the leadership of New York and Ohio by independently opting to add Duchenne to newborn screening requirements. But it is time national officials give babies in the 47 other states the same chance at early detection and better lives.

Our society relies on science and technology to calibrate as much of our lives as possible, so why shouldn’t the simple, reliable newborn test for Duchenne be on the federal Recommended Uniform Screening Panel (RUSP) every infant receives? We should not need parental intuition to identify the fatal reason boys like Brecken do not crawl, walk or develop skills on time.

This week, hundreds of rare disease patients and advocates will travel to Capitol Hill as part of Rare Disease Week to meet with members of Congress and policy leaders.

My family’s story shows why expanding newborn screening must be a priority. Although we struggled to identify the cause of Brecken’s delays, he was actually diagnosed more than two years before the average patient with Duchenne. We got lucky from there. The serendipitous opportunity to enroll him in a groundbreaking gene therapy clinical trial preserved years of muscle strength and is why he still, at age 10, can do his favorite thing — jumping into the pool, cannonball style. Without early intervention to halt the typical Duchenne timeline, Brecken would be walking his last steps instead.

Every family should be so lucky, but the easiest fix — adding Duchenne to the federal RUSP — has not happened. The federal Advisory Committee on Heritable Disorders in Newborns and Children is reviewing the Duchenne nomination, a significant step toward earlier detection and treatment.

Though the RUSP is not binding, 11 states adopt it in full for their newborn screening requirements, and many others rely on it for additions. Adding Duchenne would provide the necessary encouragement for all states to follow with haste. We must act to give our babies a better chance than patchwork, state-by-state adoption affords.

Policymakers cite the absence of treatments as a reason to omit a condition from newborn screening. That is no longer true for Duchenne: Seven treatments are FDA approved, and many more are in clinical trials. The gene therapy Brecken received in his trial is now commercially available to boys ages 4 and 5 years old — a limited approval that further underscores the urgency of early detection because so many patients are already ineligible by the time they are diagnosed.

Delays in diagnosis break the first rule of medicine: to do no harm. While searching for answers, some parents unwittingly seek physical therapy for their babies that damages their muscles. In contrast, others miss clinical trial windows they otherwise could have pursued. While treatment halts degeneration, it cannot reverse muscle damage once it occurs. That is why we in the Duchenne community often say: Time is muscle.

Recently, we watched Brecken playing soccer, running confidently up and down the field, smiling as he jumped and high-fived his teammates after a goal. These are moments we thought we would never see. It is heartbreaking to consider how different our lives would be had we not received his diagnosis when we did. It is shameful to keep letting time work against families when a simple, inexpensive test can be added to the heel prick babies routinely receive at birth.

Despite all the advances of modern medicine, too many children’s outcomes still rely on rudimentary gut feelings and right-place, right-time good luck. By adding Duchenne to the national guidelines, RUSP officials can give families the most effective first step toward managing the disease: the power of knowledge.