Families Who Lost Children to a Spinal Disease React to New Screening Law

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Arkansas Governor Asa Hutchinson is set to sign a bill into law adding a deadly disease to the list of mandatory screenings for newborns. 

This new piece of legislation affects two local families. 

“The doctor turned to us and said your son has SMA and he’s not going to make it to his first birthday,” Patrick Woodruff said.

For Spinal Muscluar Atrophy, or SMA, timing is everything. 

“There’s no cure,” Woodruff said. “There’s no treatment. No medicine. All you can do is go home and love your baby.” 

But after only 87 days, time ran out for the Woodruffs. 

“Since that day my wife and I made a commitment that we are going to put all of our time and money into making this on the newborn screen list,” Woodruff said.

After grieving, sharing their son Miller’s story, and starting their own foundation, SMA awareness was gaining traction in NWA.  

In 2016, the treatment Spinraza was approved.

Three years later, lawmakers are making a big statement. 

SMA is a genetic disease that breaks down the nervous system, causing the brain to stop sending messages to muscles. 

Also, SMA is an autosomal recessive genetic disease.  That means a person must have two copies of a defective gene to have the disease.

SMA affects about 1 in 10,000 infants. 

Tuesday, the state legislature signed House Bill 1074 adding SMA to the mandatory screening list for newborns.

Less than 10 miles away, the disease struck a chord with another family.

We spoke with Emily Ainsworth-Orfan just three weeks ago. 

Her son, Truman, who had SMA, was only alive for 20 days. 

The Orfans have since moved to Virginia, but their story made an impact here in Arkansas. 

SMA went from a foreign thought to now sitting on the governor’s desk, hopefully replacing years of heartache with years of life. 

“We felt helpless,” Woodruff said. “I couldn’t do one thing. Thank goodness these families won’t have to go through what we went through.” 
 

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