By Ashley Peterson-DeLuca
Five-year-old Everleigh Huskey loves sparkly high heels, a troll with bright pink hair and says her favorite color is “rainbow.” She is a self-described “fancy girl.”
But for a child with a colorful personality, her last year has been dominated by numbers: 70 needle pricks, 40 blood transfusions, low platelet counts and the search for one bone marrow donor.
In January 2024, Huskey was diagnosed with a rare and life-threatening blood disorder called Hepatitis-associated aplastic anemia. In short, her bone marrow, which is necessary for maintaining some of the body’s most important functions, stopped working. She needed to be given donated blood cells and platelets.
“Blood transfusions saved her life,” says Huskey’s mom, Emma.
Diagnosing a rare disease
For the Huskey family, last year’s winter holidays were not just marked by the gathering of loved ones. At Thanksgiving, Huskey’s aunt noticed that her skin looked too tan, or yellow, for winter. This prompted Emma Huskey to take her daughter in for her first of many ER visits and consultations with specialists.
On New Year’s Day, Emma Huskey noticed “gnarly” bruises on Huskey’s legs that didn’t have a cause. She took Huskey to the ER again for bloodwork. They were barely out of the parking lot when the hospital called to ask them to return immediately because her platelet count was so low.
After meeting with blood and cancer specialists, they ruled out all diseases but one: Hepatitis-associated aplastic anemia. Fewer than 1,000 people in the United States are diagnosed with aplastic anemia each year.
Waiting for transfusions
Bone marrow produces white blood cells, red blood cells and platelets. Without enough white blood cells, the body’s natural disease-fighters, she was suffering from almost constant colds and fever. Her bone marrow also wasn’t producing red blood cells, which deliver energy-providing oxygen. And without platelets, which cause blood to clot, Huskey sported mysterious bruises and spontaneous bleeding from her nose, tongue and mouth.
“We had to wait for her platelet count to drop so low that she was basically a zombie. We just watched her battery drain and would have to carry her into the ER,” recalls Emma Huskey.
Huskey bouced back quickly, returning to her bright, delightful self.
“She’s just so funny and caring with the doctors and nurses. She would invite them to play with her or to come home with us to watch the movie Trolls,” says Emma Huskey. Dolly, the character from Trolls with the fuchsia hair, became Huskey’s emotional support doll during hospital visits.
The road to recovery
“Blood transfusions kept Everleigh alive for six months,” says Emma Huskey. But it wasn’t a long-term solution. They were watching her spiral downwards and spending most days in the hospital. She needed a bone marrow transplant.
In May 2024, Huskey and her mom flew from Omaha to Minnesota for the surgery. After a record-setting 19 days Huskey’s transplant worked. She started to produce her own blood cells again and her symptoms subsided.
“It felt like the clouds lifted,” says Emma Huskey.
The Huskey family and friends give back
Everyone at Emma Huskey's work wanted to know how to help. She worked with her boss to organize the first of what will be many blood drives in Huskey’s honor in October.
“Once you see a blood donation save your child’s life, you know the difference it makes,” says Emma Huskey.
Emma Huskey reserved the space and brought the tables, and the Red Cross did the rest to put on the blood drive. They reached their goal number of units that day. But what made Emma Huskey feel the best were the number of first-time donors.
“I really wanted to help people understand that giving blood really does matter,” she says.
They’re planning on another to celebrate Huskey’s “second birthday,” her transplant anniversary, in May.
Help others like Everleigh. Find a blood drive near you: https://www.redcrossblood.org/
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