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Opinion: Colorado’s clear 2020 vision for newborn screening of spinal muscular atrophy will save lives

Thank you, Colorado! As of this month, our state is on the right side of history, joining a growing number of states that now screen newborns for spinal muscular atrophy, or SMA.

Recognizing the absolute urgency and importance of newborn screening for SMA, the Colorado Board of Health took action to approve this lifesaving test.

This is indeed an important moment to recognize, and while it won’t change the course for our son, Levi, it is a huge win for children born in Colorado, now and well into the future. 

Michelle Pritekel

Levi is 8 years old and has come a long way since his diagnosis with SMA, a genetic disease characterized by muscle weakness that affects a person’s ability to walk, eat or breath.

At just 21 months, we suspected something was quite wrong with Levi. He had been falling suddenly, and seemingly without cause. We discussed our concerns with Levi’s pediatrician. She agreed that something was wrong, and recommended we go to the Center for Gait and Movement at Children’s Hospital Colorado for testing.

It would take another six weeks, with many doctor visits and an overwhelming amount of anxiety before we received Levi’s SMA diagnosis. 

I will never forget that stress-filled time in our lives. To say that Levi’s experience with SMA has changed everything for us would be an understatement.

The disease challenges us financially with treatments, therapies, home modifications and equipment – the necessary costs are extreme. Harder yet is the emotional impact – I am always worried about Levi’s safety, and it is particularly difficult to watch him be left out of typical childhood experiences due to his disease. 

And yet, each day my son makes me so unbelievably proud. Our journey is difficult, but because Levi wakes up every day with an unwaveringly positive outlook, he gives me strength every step of the way.

READ: Colorado Sun opinion columnists.

Fortunately, since his diagnosis, there have been many important medical breakthroughs, offering new and effective SMA treatment options. Many families have certainly benefited from these advancements, and children diagnosed with SMA today can have even better outcomes. That’s the remarkably good news. 

But new treatments on their own are not enough. It takes early identification, early diagnosis and early treatment of SMA to maximize a child’s health outcomes.

Taking fast action around an SMA diagnosis as early in life as possible will dramatically improve a child’s quality of life and can literally mean the difference between life and death.

The truth is, there is no time to waste for families like ours. Universal newborn screening is the best way to ensure every child diagnosed with SMA has the best possible chance at a healthy life.

The U.S. Department of Health and Human Services strongly encourages that every newborn be screened for SMA at hospitals in the United States.

Yet testing for SMA in newborns across the country remains spotty. Colorado is just one of 22 states that now test for SMA as part of their mandatory newborn screening program. For a baby born with SMA, it’s not a matter of IF symptoms will set in, it’s a matter of WHEN. 

I am beyond grateful that Colorado has shown this kind of bold leadership. My hope now is that the rest of the U.S. follows our lead and moves quickly to implement this lifesaving measure in every state.

Given the availability of two effective treatments – and more options on the horizon – the wait is both unnecessary and devastating for parents like me who have children with SMA. All children with SMA deserve the best chance at a healthy life. Learn more about SMA at www.curesma.org

Michelle Pritekel has been a champion for Cure SMA since her son, Levi, was diagnosed in 2014. This will be her fifth year as chair of the annual Colorado Walk-n-Roll Walk for SMA. Michelle resides in Morrison with her husband, Brian, and 8-year-old son, Levi.