THE FAME: After becoming a viral YouTube sensation and meeting celebrity idols, like Taylor Swift, Audrey Nethery continues to use her platform to raise awareness about her rare disease. 
Photo: Julie Haise

For many people, a viral video is a means to get likes on social media or to enjoy 15 minutes of fame. But for Audrey Nethery, a YouTube dancing sensation, such videos have offered a global platform to raise awareness of a rare inherited bone marrow syndrome. Nethery was born with this disease, known as Diamond-Blackfan anemia.

A new approach

9-year-old Nethery, who takes steroids to manage the incurable condition, began making headlines in 2016 after her parents posted videos of her doing the Latin American dance, Zumba, to raise money for the DBA Foundation. Two years later, Nethery and her family have continued to raise money for research — though now, they’re taking a fresh approach to their cause.

“Even people who don’t know who she is … they see her, and she makes people smile.”

“We’re taking a little break from the Zumba,” says Nethery’s mother, Julie Haise, explaining that Nethery has since taken up cheerleading, along with piano lessons and singing in her elementary-school choir.

“I really like piano!” says Nethery, adding that she practices often.

Another one of Nethery’s hobbies is cooking — something she and her grandmother employed to compile a cookbook of about 200 family recipes. Sales help benefit the DBA Foundation. “[Audrey’s] favorite recipes are cheesy biscuits and chocolate pizza,” says Haise, explaining that as of late August, they had sold over 200 copies in one month.

Using fame for good

In spring 2019 is the fifth Audrey Nethery Annual DBA Benefit, for which hundreds travel to the family’s hometown of Louisville, Kentucky. The event raises between $8,000 and $10,000 annually.

“In years past, people who have followed her on Facebook travel from as far as Canada just to meet her and share their support for us,” Haise says.

Nethery’s fame has led her to meet celebrities like Selena Gomez, members of the 2016 U.S. Olympic Gymnastics Team, Taylor Swift (her favorite celebrity she’s met) and most recently country musician Luke Combs.

“She’s a normal 9-year-old,” says Haise, before being cut off abruptly from Nethery: “Excuse me, I’m an awesome 9-year-old!”

Haise continues, “That’s what it’s like to be [Audrey’s] mom — she’s 9 going on 17.”

Still, Nethery stands out from the crowd. “Even people who don’t know who she is … they see her, and she makes people smile,” Haise says.