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Mother who lost 5-month-old son to rare genetic disease walks for a cure

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Posted at 4:23 PM, Nov 10, 2020

TAMPA, Fla. — In 2009 she lost her son to a rare genetic disease. He was only five months old. Since that time, Audra Butler has been raising money and awareness.

All indications were that Andy was a perfectly healthy baby boy.

“Everything looked great until it didn’t,” said Butler. “When he was about four weeks old, he really started to not move the way that he should.”

Andy was eventually diagnosed with Spinal Muscular Atrophy or SMA, a rare genetic disease that affects one in 11,000 babies born.

“So suddenly our healthy baby is now facing death, and we never heard of the disease before, we had no idea that we were carriers of it,” said Butler.

At the time, there was no treatment. Andy died at just five months old.

“I knew that I needed to make a difference, I needed to speak for the people who couldn’t speak, and I needed to share our story,” said Butler.

So Audra formed Andy’s Army. Every year they lace up the sneakers to raise money and awareness. They call it the Cure SMA Walk and Roll.

“The thing that’s so incredible is to hear every year the amount of development that has happened from the year past,” said Tanya Cielo, who has been walking with Butler every year.

Butler began the walk after her son’s death 12 years ago. Since that time, the FDA has approved three treatments for SMA. While new this year, every baby born in Florida is required to be tested for SMA.

“No parent is ever going to be blindsided the way that we were with a healthy baby that is suddenly sick,” said Butler.

This year the Cure SMA Walk and Roll is being done virtually as teams hit the pavement nationwide. If you sign up this weekend, donations will be matched up to $2,500.

“When Andy was dying, I made him a promise that I wasn’t going to stop this fight until we were at a place where there was a cure, and we are not there yet, but we are getting close,” said Butler.

For more information on how to sign up, go to Curesma.org.