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Rare Diseases

One 8-Year-Old Girl Dances Her Way to a Cure

Photo: Courtesy of Life Touch

One inspiring little girl isn’t letting her rare disease get her down. Instead she’s sharing her story one video at a time.

Audrey Nethery didn’t expect to be an internet sensation. But her fans, which include over 1.4 million followers on Facebook and over 250,000 YouTube followers, can’t get enough of the little girl and her important message.

The eight-year-old from Louisville, KY, has Diamond Blackfan Anemia, (DBA) a rare inherited bone marrow syndrome, in which an individual’s bone marrow doesn’t produce red blood cells. People with DBA become severely anemic and there is no cure.

A passionate dancer, Nethery spreads awareness about her condition through her viral dancing videos. She’s helping raise money for The DBA Foundation, Inc., hoping to find a cure for the disease that affects about 800 people in the United States and Canada.

Dancing queen

It all started with a Zumba video.

Nethery had been making singing and dancing videos and her parents posted the videos to a Facebook page as a way to promote a DBA fundraiser. A video of the then six-year-old girl doing Zumba took off.

The Zumba community “shared and shared and shared. It was amazing,” says Julie Haise, Nethery’s mother. “We were getting 10,000 likes a day. We just had no idea.”

Soon Nethery was invited to attend Zumba’s national convention and media attention followed. So far, the little girl has met Rachael Ray and Taylor Swift, danced with Selena Gomez and interviewed Chris Colfer from Glee. While she’s shy at times, she doesn’t get too star struck.

Nethery’s posts are a combination of her interests, like dancing, and updates about her health.

“It’s been cool that everybody has been donating money because I want that money to go to charity so they can find a cure,” she says.

Rare disease diagnosis

Nethery was diagnosed with DBA as a baby. Born a month early, she spent three weeks in the hospital following her birth.

Her pediatrician noticed she was pale and wasn’t eating. Tests showed a very low blood count. Her complete blood count was a four, compared to normal levels which range from 12 to 16. After that, Nethery had her first blood transfusion.

DBA treatments include steroids and transfusions.

“In some cases, patients elect to do a bone marrow transplant to, in essence, cure the DBA,” says Haise, noting they’re not choosing a bone marrow transplant for their daughter since it’s too risky.

As an infant, Nethery was transfusion-dependent.

“Audrey was transfused monthly from two months old to a year and a half,” says Haise, after which she then started a steroid trial. The medicine works but it causes her face to get puffy and round.

“She went five years without a blood transfusion,” says Haise, who says her daughter’s last transfusion was in October 2016. Nethery also takes ultra-refined fish oil, which seems to help stabilize her condition.

“We know there may not be a cure but she can live a normal life,” says Haise.

Internet star

Nethery is small for her age but she’s full of energy. “She does not get tired,” says her mother.

The third-grader, who is on her school’s cheerleading squad, loves reading, hanging out with her friends, staying up late, and playing with her cat, Harper. Nethery has made cooking videos, interviews and more. But her dance videos are her favorite.

“I think it’s motivating kids and grownups a lot to get up and dance,” says Nethery, who wants to be an entertainer when she grows up.

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