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As a mother, Mixi would do anything for her 11-year-old daughter Jara.
She’s used to being able to fix things for her—so when a major health problem came along in 2020 that she couldn’t fix, she felt helpless. “My world just crumbled,” Mixi says. “I knew she was never going to be the same.”
In fall 2020, Jara lost her appetite and soon started throwing up at least twice a day. Her mom took her to see multiple doctors near their home in Beloit, Wisconsin, but while the doctors ordered blood work and a chest X-ray, they couldn’t find anything wrong with her. Then, finally, a doctor found that Jara’s hemoglobin level was dangerously low and sent her to the emergency room. From there, she was transferred to a children’s hospital in Chicago.
At the hospital, doctors started the process of giving Jara blood transfusions. “Eventually, they pulled me out of the room and told me her kidneys weren’t working, and they had no explanation of why they had stopped functioning,” Mixi says. “She would need dialysis as soon as possible. I was just in shock. All I could do was cry.”
Jara suffered from anti-neutrophilic cytoplasmic autoantibody (ANCA) vasculitis, an autoimmune disease in which the white blood cells start attacking small blood vessels in the body. She stayed in the Chicago hospital for a month while she was receiving dialysis, then was transferred to American Family Children’s Hospital in Madison, Wisconsin. “She spent months in the hospital,” says Mixi. “It was so hard, because every time they had to draw blood, I had to hold her down. She suffered a lot.”
Eventually, caregivers transitioned her to peritoneal dialysis so she could undergo dialysis at home while she was sleeping, and Jara and Mixi finally left the hospital. Shortly after they returned home, however, Jara suffered a stroke in her sleep. Her mom drove her back to Madison and doctors there performed a magnetic resonance imaging (MRI) test, which showed a blood clot in her brain. She was in a coma for a week.
“I stayed by her side, talking to her and keeping her up to date,” says Mixi. “It was so wonderful, because the nurses she had gotten to know while she was in dialysis came up to talk to her while she was in the coma.”
After Jara woke up, she stayed at the hospital to undergo rehabilitation and speech therapy. She continued having non-epileptic seizures, but gradually improved until she was able to go home three months after her stroke.
In early February 2022, Mixi received a call from UW Health: They had a kidney from a deceased donor that would be a good match for Jara. Could they be at the hospital right away? Mixi joyfully said yes, and on Feb. 6, Jara received the gift of life.
“After the transplant, she was a completely different person,” says Mixi. “She was hungry and was devouring everything. She was a happy child—the sadness had left her face. It was like a miracle.”
Now, Jara has more energy to do things she loves, like paint, make slime and work on arts and crafts. “If you met her, you would never know she was sick,” says Mixi.