Des Moines, IA

Abby Hooper is a sweet and energetic pre-teen who loves to cook for her family, work in the garden, and play sports. You’d never know from looking at her that she’s battling a chronic disease.

In October 2014, Abby started experiencing swelling and pain in her joints. Thinking it was juvenile rheumatoid arthritis, her parents, Kathy and Jim, made an appointment for Abby to see a specialist in Des Moines later that winter.

But Abby’s condition worsened—more swelling in her joints plus cold-like symptoms, fever, nosebleeds, weight loss, pink eyes, and red spots on her arms and legs. She was so sick that she went to her local doctor five times in just six weeks.

In February 2015, on Friday the 13th, in fact, Abby was at a local hospital for testing.

“As the lab work results were coming in, we got a call saying that we needed to get to Iowa City as soon as possible,” says Kathy.

Abby was rushed to University of Iowa Stead Family Children’s Hospital.

“Immediately they started running tests on her [when she got here],” remembers Jim.

Abby was admitted to UI Stead Family Children’s Hospital and began a low-dose chemotherapy regimen to address her issues. One morning during her stay, she woke up coughing up blood. The small vessels in her kidneys had been damaged, and there was now blood in her lungs. Abby was taken to the Pediatric Intensive Care Unit so her care team could keep her lungs from collapsing.

“It’s a kind of helpless feeling that you can’t put a new part on and make it work,” says Jim. “But you have to put your faith in the folks that are the experts.”

Soon after, Abby was diagnosed with Wegener’s disease, a disorder that causes inflammation of the blood vessels in the nose, sinuses, throat, lungs, and kidneys.

“We had a great team of doctors when we were here. We called them the ‘Dream Team,’” says Kathy. “He would keep saying, ‘It’s all about the kids.’ He was caring for your child like it was his child.”

Abby is grateful for her UI Stead Family Children’s Hospital care team, who she now views as part of her family.

“He was the one who pretty much saved my life,” says Abby. “My doctors and nurses mean everything to me.”

Abby continues to receive low-dose chemotherapy every six months to keep her symptoms at bay. She also takes daily medication and is on a low sodium diet to protect her kidneys.

“At first, I didn’t want to come the distance [to Iowa City] and be so far away from home. But as each thing started happening with Abby, I was so thankful she was here,” says Kathy. “Everyone in the hospital was wonderful.”

“There is a love and compassion at this hospital that I’ve never seen before,” adds Jim. “I think this is kind of a gem in the middle of the cornfield.”

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