Known as Diamond-Blackfan Anemia (DBA), the uncommon disease happens when a person’s bone marrow fails to produce red blood cells, leading to severe anemia. Typical symptoms include extreme fatigue, weakness, paleness, and small stature.
Audrey Nethery is just like many other 6-year-old girls: She’s got tons of energy and absolutely loves to dance. She also just so happens to have a rare blood disorder, which she was diagnosed with at 2 months old.
For the past two years, Audrey’s family has held a local fundraiser in their Kentucky town to raise money for DBA research, her mom, Julie Haise, tells WomensHealthMag.com. After this year’s event, they set up a Facebook page called Audrey’s DBA Photo Booth to share pictures and videos of the sweet little girl, as well as to raise more awareness about the disease. Some of the videos, featuring Audrey dancing during the kids’ Zumba class she takes at My Gym, caught the attention of some high profile members of the Zumba community.
Audrey was then invited to the company’s annual instructor convention, which took place in Orlando from August 13 to 16. She helped open the event, dancing on stage in front of a crowd of thousands alongside the two instructors who teach her kids’ class, as well as five Zumba superstars. The video of this performance has gotten more than seven million views since her dad posted it on YouTube back in August. How cute is Audrey?!
“She did an amazing job,” says Julie. “She’s a very outgoing child, and she just loves singing and dancing. Last Christmas, she got a karaoke machine, and she spends a lot of time performing for our family.”
When it comes to her DBA, Julie says Audrey’s luckily not in a lot of pain. (She uses steroids to manage the disease.) Periodic blood transfusions are another popular treatment option, but Julie says they come with their own set of side effects, including too much iron in the blood, which can damage the liver and heart. In June, Audrey had successful surgery to correct a congenital heart defect.
Despite her illness, Audrey’s just a normal kid, her mom reiterates. “She gets up early in the morning, goes to school, does her homework after school, and plays outside,” says Julie. “She doesn’t have a lot of outward symptoms aside from being small. We’ve been very fortunate.”
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