By Anis Shakirah Mohd Muslimin

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Unlike many, Abby Hooper’s recurring two-hour drives from Des Moines to Iowa City are more than just regular road trips.

When the 12-year-old does visit the city, her usual destination is the University of Iowa Children’s Hospital. This weekend, however, she’s heading across the street to Kinnick Stadium to take on the role of Kid Captain for the Iowa-North Dakota State football game.

The Kid Captain program highlights the stories of pediatric patients at the Children’s Hospital while introducing them on the field during home football games.

With this being only her second visit to Kinnick, Abby said, she’s excited to be on the actual field.

“Yeah, I’m excited … I like Herky,” she said.

Despite living with a chronic disease, the seventh-grader doesn’t let that stop her. She still continues to cook with her mother, work in the family garden, and shop.

“I did beef stroganoff … my mom got me into it [cooking and gardening],” said Abby, who has Wegener’s disease, a disorder that causes inflammation of the vessels in the nose, sinuses, throat, lungs, and kidneys.

When she discovered she had the disease, Abby said, she was scared.

“Not everyone has it, so me getting it was scary, because I didn’t know if I was going to survive,” she said.

Abby’s mother, Kathy Hooper, and her husband, Jim, nominated their daughter to be a Kid Captain because they wanted to give Abby a new outlook.

“She has been through so much in her life, and we wanted something positive,” Kathy Hooper said. “She’s going to the hospital all the time, even after a 17-day stay there; she still has quarterly visits, and she has chemo every six months. She visits her doctor here on a regular basis, too.” 

In October 2014, Abby started experiencing swelling and pain in her joints. Despite the pain, her fear of visiting the doctor made her cover up her symptoms, even if it meant limping around.

“She kind of faked her way through it so that she didn’t have to go to the doctor,” Kathy Hooper said. “She was afraid of what she was going to find out.”

Before proper diagnosis, her parents thought Abby had juvenile rheumatoid arthritis, so her parents made an appointment for Abby to see a specialist in Des Moines.

Soon, Abby’s condition started to worsen — she experienced more swelling in her joints, cold-like symptoms, fever, nosebleeds, weight loss, pink eyes, and red spots on her arms and legs.

In February 2015, Abby was at a local hospital for testing when her family was told that they had to make the two-hour journey to Iowa City. Abby was rushed to the Children’s Hospital.

“It was really hard, I didn’t leave her side the entire time she was in the hospital; I slept beside her bed in a chair,” Kathy Hooper said. “It was heartbreaking.”

After numerous tests and nights in the Pediatric Intensive Care Unit, Abby was diagnosed with Wegener’s disease.

UI Assistant Professor Carla Nester, one of the seven Children’s Hospital pediatric nephrologists who were part of Abby’s medical team, admires Abby.

“She’s just a pleasant young lady,” Nester said. “She was one of those kids who never got defeated by this. I just had the impression that she was just going to push forward; she never got impatient with [hospital staff].”

Abby still receives low-dose chemotherapy every six months and takes daily medication, and she is on a low-sodium diet to protect her kidneys.

Despite her roller-coaster journey so far, Abby continues to stay positive.

“I spend time with my family and friends; that makes me happy,” she said.