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When Michael and Lena Hill were looking to move from North Carolina in 2006, they had to consider more than just where they wanted to work as English professors.
Their daughter, Caitlyn, then 3 years old, had been diagnosed with sickle cell anemia as a newborn. Sickle cell anemia, a hereditary blood disorder, causes an abnormality in the molecules that carry oxygen in red blood cells. This abnormality can slow or block blood flow and oxygen to parts of the body, leading to a number of serious health problems.
In order to ensure Caitlyn had access to the multidisciplinary care team she needed, the Hills looked for jobs near qualified children’s hospitals. Upon arriving in Iowa City for interviews at the University of Iowa, Michael and Lena met with University of Iowa Stead Family Children’s Hospital hematology and oncology specialists.
“You could tell from the beginning that Caitlyn was everyone’s principle focus,” remembers Lena.
Shortly after relocating to Iowa City, Caitlyn began suffering mini-strokes, including some that caused her to lose control of her facial muscles.
“Watching your child have a stroke is one of those things you wouldn’t wish on any parent,” says Lena.
Once she had her first full-blown stroke in 2009, it was clear Caitlyn would need to start a blood transfusion regimen to reduce the number of abnormal cells in her blood.
Despite regular transfusions for years, the strokes continued.
“If you’re having multiple strokes and you’re 10, chances increase that you will eventually suffer a serious one,” says Lena. “People who have sickle cell die from strokes.”
In 2013, Caitlyn underwent a bone marrow transplant. Today, she has 100 percent donor red blood cells and is considered cured of sickle cell anemia.
Since her transplant, Caitlyn’s body is still adjusting to her new cells. She visits UI Stead Family Children’s Hospital regularly and takes roughly 30 medications per day as part of her post-transplant care, but she handles it all in stride.
“When I had (Caitlyn’s younger brother) Michael Carl, she couldn’t believe that I had only been hospitalized to give birth to my children,” says Lena. “Her whole life has been spent in and out of hospitals, and to her that’s normal. It’s not a big deal.”
Caitlyn’s UI Stead Family Children’s Hospital care team has supported the entire family, including Michael Carl, who also has sickle cell anemia.
“They get the idea that healing is a community service,” says Caitlyn’s father, Michael. “What you get at the UI is a fundamental sense that what they’re here to do is serve the public by making people better.”
An avid reader and gifted writer, 11-year-old Caitlyn gives presentations about sickle cell anemia to her classmates, and has proved her potential is limitless.
“My hopes and dreams for Caitlyn are that she makes the most of everything she’s been through,” says Lena. “She doesn’t realize how extraordinary she is.”
Michael adds, “The future holds opportunities for Caitlyn to grow by sharing her story with the world, and it’s already begun.”