Meet Audrey Nethery, a spunky 6-year-old from Louisville, Kentucky. She loves to listen to music, and collect dolls and stuffed animals. But it’s her love of dancing – particularly Zumba – that has taken social media by storm, melting the hearts of millions (ours included), while putting the rare, underresearched bone marrow syndrome she has – Diamond Blackfan Anemia – in the spotlight.
Audrey’s proud parents, Scott Nethery and Julie Haise, started posting videos of her doing her thing in a local Zumba class on Facebook, and their world exploded. The 6-year-old dancer’s zest for the feel-happy, cool move-packed, music pumping workout has inspired millions of people to fall in love with her. Subsequently, all the unexpected attention on Audrey has given her family a great opportunity to raise much needed awareness and funds for Diamond Blackfan Anemia (DBA).
Here’s Audrey gettin’ down to a little Uptown Funk…
According to the family’s Facebook page, “Diamond Blackfan Anemia (DBA) is a rare blood disorder. In DBA, the bone marrow (the center of the bone where blood cells are made) does not make enough red blood cells that carry oxygen throughout the body.” It’s a life-threatening condition because you need a certain amount of red blood cells to live. So to treat the very low cell counts, the two most common options are corticosteroids and blood transfusions.
Scott explains that the steroids, which are used to stimulate bone marrow to produce red blood cells, have many side effects and only 40% of patients respond to them. When it comes to blood transfusions, some DBA patients require them every 3-5 weeks to live. Bone marrow/stem cell transplantation may also be considered, but, as he and Julie point out, “for a rare disease like DBA there are typically too few researchers to truly push research forward.”
As a result of her DBA, young Audrey has already undergone 20 blood transfusions, and her growth is notably slower than that of other kids, in part, because of the steroids she has to take.
But despite everything this brave girl continues to endure, Audrey keeps a super positive attitude, a big smile on her face, and her Zumba moves tight. What’s more, none of it stops her from belting out a medley of classic lullabies for her baby doll when the moment strikes.