Zumba, the Latin-derived exercise and dance craze that is making history these days, has only deepened its popularity with a new discovery. The mother of a darling child, Audrey Nethery, is herself a zany Zumba dancer. Haise Nethery, Audrey’s mother, was so impressed with her daughter’s performances that she posted videos of them on the internet. The Zumba people took notice, and a star was born.

That stardom is on display in this 2015 video of Audrey dancing at the International Zumba Convention in Orlando, Florida.

What makes Audrey of Louisville, Kentucky, even more special is that she has a debilitating disease known as Diamond-Blackfan anemia, which inhibits the production of red blood cells. This anemic condition can cause a lack of energy, but at least it does not appear to get too much in the way of Audrey’s dreams.

The congenital disease was first described back in 1936, and it is named for two pediatricians, Louis Diamond and Kenneth Blackfan, who worked on identifying it in 1938. As those born with it suffer from constantly low red blood cell counts, common side effects include exhaustion or tiredness, but also low weight at birth, delayed growth during childhood, and a higher risk of developing leukemia and certain other cancers, such as bone cancer. About half of all people affected also have a variety of corresponding abnormalities, including malformations of the skull, thumb or inborn heart defects. Common examples are an unusually small head, low frontal hairline and very distinctive facial features such as droopy eyelids, a very broad and flat nose, wide-set eyes or a smaller lower jaw. Diamond-Blackfan anemia is a very rare disease, affecting only 5-7 children per million births.

Sadly, the disease is also not yet well researched. According to current data, it can be caused by mutation of several different genes and vary greatly even within affected families. In some cases, the underlying genetic mutations have not yet been identified.

While Diamond-Blackfan anemia is definitely a serious congenital disease, the prognosis is often quite good nowadays. According to OrphaNet, the most common treatment methods are regular blood transfusions, steroid therapy and bone marrow transplants. Unfortunately, the different treatments come with their own quite serious side effects.

As a side effect of the steroids, people suffering from Diamond-Blackfan anemia are often of lower stature and may suffer from further complications. While less serious, transfusions need to be done at a hospital — and regularly at that — which severely limits living options and quality of life.

As Diamond-Blackfan anemia is also an uncommon, unknown disease, not much money is invested into researching it or finding a cure. This is one of the reasons why young Audrey and her family encourage her to dance and share her story. It might one day be possible to develop a cure or find better, less invasive or side effect-laden treatments by raising awareness.

In order to do that, Audrey’s family made a YouTube channel where young Audrey entertains the viewers with dance videos, cooking videos, slice of life vlogs and stories. The channel, which was originally established in 2013, has grown in popularity over the years, reaching 1.1 million subscribers as of February 2021. Many people all over the world enjoy watching Audrey conquer life and follow her dreams.

When the Zumba people saw the videos, they invited her to dance with a group of Zumba instructors at the International Zumba Convention in Orlando, Florida. All eyes were on little Audrey, 6 years old at the time, as she danced her way into the hearts of all who watched. She had been terribly excited for this moment ever since Zumba had reached out to her, her mother confessed later to Today. She stated:

“When she’s not doing Zumba, she’s singing and dancing, and there was a lot of singing and dancing going on after that call.”

Audrey had originally picked up Zumba by chance. The local gym, where she had been taking dance lessons since she was only one year old, had started offering Zumba classes. Her mother signed her up for one purely to see if she would like it — and never expected it to have such far-reaching consequences. Haise does not regret going for the dance classes, though.

“Every time I see her dance, even when it’s just in her class, it makes me cry, but seeing her up on that stage was incredible,” Haise told Today. “When she’s dancing, she’s happy and brings so much joy to everyone watching.”

Her performance in Florida was not the only honor for Audrey. According to People, she also met with several famous Zumba instructors and took a magical trip to Disney World while in Orlando.

Her mother seems delighted that her daughter was recognized by the group. She posted the video of Audrey’s Florida performance with them.

Along with the video, she wrote a note of thanks that read, “Audrey was invited by Zumba to open the International Zumba Conference!!! This is her performance with her local instructors and some of the best Zumba dancers in the Zumba community. Thanks sooooo much Zumba!!!!”

It’s likely that Zumba also appreciates everything Audrey did to make their performance a most memorable and special one. As of 2019, Future of Personal Health reports that despite her excellent dance skills, Audrey is taking a break from Zumba to focus on schoolwork and extracurricular activities like choir, cheerleading and piano lessons. However, the family continues to raise money and awareness for patients diagnosed with Diamond-Blackfan anemia.

Since then, Audrey has danced publicly several times more. In 2019, she took part in the RaiseRED Dance Marathon. The event was held by the RaiseRED fundraising organization, belonging to the Norton Children’s Cancer Institute and the University of Louisville School of Medicine’s Department of Pediatrics’ Division of Hematology and Oncology. It is their mission to raise funds for the treatment and research of all kinds of blood and cancer-related diseases affecting children especially. We hope their mission will be met with success and that growing awareness about diseases such as Diamond-Blackfan anemia will help with this goal!

Did Audrey inspire you? Let us know in the comments and pass this along to your friends and family to inspire them, too!