#IGiveBeyond: Audrey Nethery faces Diamond-Blackfan anemia with a fighting spirit.
In the home video, a diminutive blonde girl in a purple dress and matching headband sings and dances along to the Selena Gomez hit, “Love You Like a Love Song.” On its surface, the video is just one among thousands of YouTube videos posted by proud parents to showcase their talented progeny. Yet there’s something undeniably special about this particular little girl. It might be the pure passion with which she sings — the way she pours her heart out with every word. Or, it could be the visible joy she exudes with each note.
The little girl in the video is Audrey Nethery, looking much younger than her six years because of a rare, life-threatening disease called Diamond-Blackfan anemia (DBA). In 2015, Audrey’s parents, Scott Nethery and Julie Haise, posted some videos online of their daughter singing karaoke and dancing in a Zumba class. They hoped a few people might take notice and donate to their cause. Instead, millions clicked, turning Audrey into an overnight viral video sensation. The “Love You Like a Love Song” video alone has been viewed more than 21 million times. Audrey has become the face of DBA, almost singlehandedly putting the condition on the public’s radar.
Born with a rare disorder
Today, Audrey is eight years old. She’s a second-grader at St. Edward School in Louisville, Ky. Just like many girls her age, Audrey loves American Girl dolls, pop music, and dancing.
Since she was little, Audrey has known there’s something special about her. She was born with DBA — a rare, inherited bone marrow disease that reduces the number of red blood cells available to carry oxygen to her body. The absence of red blood cells leads to anemia, and with it, extreme fatigue and weakness.
Like many kids with DBA, Audrey was also born with a constellation of physical issues related to her disorder — a cleft palate, a hole in her heart, and slowed growth that makes her look years younger than her age. She had surgery to correct the hole in her heart and fix her cleft palate. The heart surgery left her with pain in her throat. Audrey dealt with the discomfort with a stoicism way beyond her years. “I thought that I wasn’t going to be able to eat, but I did and my throat got better. Each day it hurted less and less,” she says. “And finally, it stopped hurting. Now my heart is repaired.”
Despite all the physical issues she’s had to endure, Audrey takes her condition in stride. “I don’t make red blood cells as much as other kids do,” she says matter-of-factly. Brushing off the height deficits in kids like herself who have DBA, she says, “That’s ok, because we know our age and we can tell people who think we’re younger than we look.”
Life with DBA
Although a small percentage of people with DBA achieve remission, for most, treatment is a lifelong undertaking. Two of the main therapies are transfusions of healthy red blood cells from a donor, and the steroid drug, prednisone, which stimulates red blood cell production in bone marrow.
Both treatments can be tough to take — even for an adult. Steroids can stunt growth, cause swelling in the face, and increase susceptibility to infections. Blood transfusions require repeated needle sticks — a painful ordeal most kids balk at. Not Audrey.
“For me it’s easy,” she says. “My dad has to go out of the room because he’s afraid of needles.”
Viral video superstar
There are times when DBA puts the brakes on a normal childhood. “I can’t do certain games or things that I want to do, and that makes me feel left out,” she says. Yet the disease hasn’t dampened her spirit, or detracted from her love for music. Her parents noticed her passion, and talent early on. “When I was a baby and my parents turned on music, I would start to dance,” she says.
Audrey immediately became an inspiration to the millions of people who watched her videos and read her story online. “Audrey, u made life so much better for so many of us,” a fan named Karina wrote on Audrey’s DBA Photo Booth Facebook page. “Love you to bits sweet baby girl. Praying for a cure for DBA.”
Becoming an internet superstar has its perks. In 2015, Audrey was invited to perform at the International Zumba Convention in Orlando. A year later, she danced with the Brooklyn Nets Dancers on the Rachel Ray Show. She’s met the cast of Disney Channel’s “Stuck in the Middle. She even got to sing “Love You Like a Love Song” with Selena Gomez backstage on the pop star’s tour.
Fame has also made her a target for autograph and picture-seekers, who track her down wherever she goes. “I don’t mind it,” she says, but celebrity does have its limits. “When I get tired, my dad picks me up.”
Wise far beyond her years, Audrey quickly picked up on the fundraising potential of having such a huge fan base. “I like when people take pictures with me, ‘cause that shows me that they’re a fan. And I like that because then they could raise money.”
Because DBA is so rare — only about 30 new cases are diagnosed each year in the U.S. and Canada — it suffers from a lack of awareness and support. Audrey and her parents have capitalized on her newfound fame to increase recognition and raise funds.
Recently, Audrey partnered with Singing For Superheroes, a nonprofit organization that works to empower kids with disabilities. She collaborated with Grammy-winning singer/songwriter Steven Battey and pop artist Kayla C. on the song “Life’s Beautiful.”
Audrey was overjoyed about making her own music video. “I had happy feelings and joy feelings and all of the feelings that start with happy, because I knew people — after they saw that — they would raise money for DBA.”
When asked what she’d most like people to know about DBA, Audrey says simply, “I want them to know that going through all of this is really hard. I want them to understand that.”
And what does the little girl who’s amassed millions of fans, sung with pop stars, and starred in her own music video do next? “I don’t know,” she says. “I know I want to see Pink, Lady Gaga, and go to Disneyworld again.”
June 19, 2017
Christopher Nystuen, MD, MBA