ANDY'S ARMY

Spinal Muscular Atrophy, or SMA, is a degenerative neuromuscular disease, and it’s the number one genetic cause of death for infants. When Andy Butler was born in 2009, his parents Audra and Alan had never heard of SMA, so his terminal diagnosis was blindsiding. At that time, there were no treatment options for Andy, and he died from complications caused by the disease when he was just five months old. Audra, who also is part of the Sarina Fazan Media team, joins Sarina on this special podcast to tell Andy’s story and to discuss how you can continue his fight as part of Andy’s Army. Join Sarina and be part of Team Andy’s Army at the Cure SMA 2020 November Virtual Walk-N-Roll by registering at www.Events.CureSMA.org/goto/AndysArmy2020. 

SMA affects approximately 1 in 11,000 births, and about 1 in every 50 Americans is a genetic carrier. Because SMA is an autosomal recessive disease, it means that both parents must be a carrier of the gene responsible for the SMA, and these mutated genes are then passed onto their child.

And that’s exactly how Andy was born with SMA. On January 8, 2009, Audra and Alan welcomed their firstborn son, Andrew Glenn Butler, into the world. At the time of his birth, he was perfectly healthy, but that would change quickly. 

When Andy was seven weeks old, he was rushed to the pediatric intensive care unit at a local hospital due to his hypotonia, which is the lack of muscle tone and movement in his limbs, and respiratory issues. Andy underwent a battery of invasive, diagnostic tests to determine the cause of these symptoms.

On March 17th, 2009, Andy was diagnosed with Type 1 SMA, one of the most severe forms of the disease. Doctors gave the prognosis of only six to nine months, sending the family home from the hospital with a referral to Hospice instead of hope.

Much like ALS (Lou Gehrig's disease) in adults, SMA causes gradual muscle weakness due to loss of motor neurons of the brainstem and spinal cord. As the disease progresses, the affected child’s muscles lose tone, movement is limited, and breathing is impaired. With no treatment, the child’s lungs will give way or pneumonia will set in, resulting in death.

Although Audra and Alan were heartbroken by Andy’s diagnosis, they knew they had to celebrate every day they had with their son. They even had birthday parties for him every month, complete with cake and presents.  

They also took Andy to countless doctor’s visits and therapy sessions. But, with no real treatment protocol available at that time, the disease still caused the baby’s muscles to weaken a little more each day, eventually impacting his ability to suck, swallow, and breathe. 

Through it all, Andy still laughed and smiled. He was a cognitively advanced baby with an attentive look in his eyes and an unbelievably long attention span. Like Andy, children with SMA generally are very aware and incredibly bright. Audra and Alan let Andy’s smile be their guide.

Between March and June 2009, Andy was hospitalized four more times for respiratory and gastrointestinal issues, including one surgery and another stay in the ICU. It was in the hospital on June 4, 2009, that Andy lost his battle with SMA at just five months old.

Suddenly, Audra and Alan were childless parents, struggling to deal with grief and to put their lives back together. But Audra had made a promise to Andy that she would continue his fight, giving her a purpose and direction.

So, Audra began to write. She was published in literary magazines and grief journals, also creating a website in Andy’s memory at www.AndysArmy.com. She reached out to the local news media and beyond, to raise SMA awareness and to talk about her family’s experience. Audra and Alan were interviewed on the nationally syndicated Daytime talk show, and Andy’s story was even chronicled in a half-hour documentary in the Florida Crossroads series on PBS (www.TheFloridaChannel.org/videos/andys-army). 

Audra led local fundraising efforts for Cure SMA, then known as Families of SMA, eventually becoming the president of the Greater Florida chapter of the nonprofit. She delved into advocacy, first speaking to OB-GYN groups to promote prenatal testing for SMA and later championing the effort to add the disease to both the federal Recommended Uniform Screening Panel and the state’s Newborn Screening Panel.

She even traveled to Washington, D.C., to share Andy’s story and the importance of early testing with the Florida legislative delegation. And, Audra was there (www.OrlandoSentinel.com/health/os-ne-sma-newborn-screening-20190216-story.html) when Florida’s Genetics and Newborn Screening Advisory Council voted to make sure that all newborns in the state would be screened for SMA. 

Today, there are three FDA-approved treatments for SMA. Newborn screening provides early detection of the disease and access to those treatments. When Andy was diagnosed, the doctors told Audra and Alan to go home and love him. While there is still no cure for SMA, a family with a newly diagnosed baby now has real options – and a future of possibility for their child.

Andy’s legacy is one of hope, and it’s also one of healing. In addition to her advocacy efforts, Audra wanted to help other bereaved families like hers cope with loss. As part of the Cure SMA National Conference, she shares tools to help parents and siblings process their grief and to find their way forward. 

And, while Audra says she will never move on from Andy’s loss, the family has moved forward, too. Andy now has a little sister and a little brother, who are both healthy and thriving. Lucy, who is 10, and Will, who is 7, share Andy’s smile. 

On Saturday, November 14th, the Butler family will be participating in Cure SMA’s 2020 November Virtual Walk-N-Roll as part of Team Andy’s Army. You can join the team for free to show your support or donate to the cause at www.Events.CureSMA.org/goto/AndysArmy2020. 

Donations made on November 14th and 15th will be sponsor-matched (up to $2,500), doubling the impact of donations that weekend! Virtual Walk-n-Roll will be open for all donations until December 31, 2020.

You can follow Andy’s Army at www.AndysArmy.com or on Facebook at www.Facebook.com/Andys-Army-153460848049808. 

If you’re interested in learning more about SMA, treatment options, and research for a cure, please visit www.CureSMA.org. 

For more discussions like this one, make sure to subscribe to the podcast “On The Record With Sarina Fazan." 

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