It hasn’t been easy, but a student from Cambridge Middle School with a big personality has used her talents and struggles to bring awareness to a rare disorder.
Kara Loader is just like any sixth grade girl. She’s been playing the violin for seven years, loves softball, and says she’s really good at school. She’s a huge Taylor Swift fan, and she has a lot of friends. But something sets Kara apart from her friends and classmates, though it’s nothing you’d be able to see on the outside.
11-year-old Kara has been battling severe congenital neutropenia since birth. Neutropenia is a rare blood disorder, meaning her body doesn’t make enough neutrophils in her white blood cells. So when Kara gets sick, or even gets a cut, her body may not fight off the infection as quickly.
Kara has to be extra cautious and carry a medical kit with her at school, and when she gets really sick, Kara visits a hematology and oncology specialist at the Cleveland Clinic. She takes a shot of neupogen every day, which helps her build her neutrophils. However, she has to watch how much she takes, because the drug increases the risk of developing leukemia.
Despite spending the majority of her life dealing with doctors, and a few long-term hospital stays, Kara is determined to make a difference.
She created the 15 second dance challenge, and her video has been viewed more than 8,000 times on Facebook and YouTube combined. “And now 8,000 people who never knew it existed… do,” Kara said.
After doing a 15 second dance, Kara asks participants to donate $5 to the Ella Jewell Foundation, to help find a cure.
“I don’t want kids to suffer like I had to,” Kara said.
She is inspired by celebrities like Taylor Swift and Ellen DeGeneres, who helped her get through some tough times in the hospital. She’s been listening to Swift’s music since she was four-years-old. She said watching Ellen makes her forget about some of the harder things she’s going through, “It just makes things easier to just, laugh a little bit,” Kara said.
Every time Kara gets a bone marrow biopsy and Taylor Swift is on tour, she gets tickets. On September 17, she’ll attend her fourth concert to see her favorite singer in Columbus, Ohio. Her dream is for her message to reach one of the celebrities she looks up to.
But even at a young age, Kara has become a bit of a celebrity of her own in the neutropenia community. She said her video inspired a woman in her 30’s to talk about the disorder for the first time .”She always thought that it wasn’t okay, like, it wasn’t normal to tell people that you actually have it. And she said that my video actually gave her the courage to tell it to other people,” Kara said.
Kara said she has one message for anyone else battling neutropenia: “I would tell them everything’s going to be okay.” Kara and her family remain in contact with families they have encountered in the hospitals and at a yearly conference for neutropenia.
Every year, Kara organizes a fundraiser called “Harvest a Cure” and all of the proceeds go to the Ella Jewell Foundation. The fundraiser allows people to buy pumpkins, and this year it is being held at the Christ Lutheran Church in Cambridge, Ohio. Harvest a Cure will be held on Saturday, October 3 from 10 a.m. to 4 p.m.
Kara wants as many people as possible to participate in her 15 second dance challenge, so more money can be raised to help research at the University of Washington.
To learn more about the Ella Jewell Foundation, click here.