Running for Her Life:

How One Family Used Exercise to Fight the Deadly Effects of Cystic Fibrosis

When Susan Hensel was told that her beautiful infant daughter Hannah had cystic fibrosis she was devastated.

“It was like a death sentence. I got a hot, tingly feeling all over. I remember thinking, ‘How can I ever be happy again knowing my child will suffer?’” Her husband Jim was equally upset.

“He was driving on the interstate when he received the news and had to pull over to the side of the road. He said it was like a knife came through the windshield,” says Susan.

When a pediatric nurse came to the Hensel’s home to explain the ramifications of Hannah’s diagnosis, Susan could hardly breath.

“She said there would be frequent hospitalizations, chronic lung infections, barrel chestedness (from struggling to breathe), clubbed fingers (from poor circulation). I was becoming more and more devastated.”

When the nurse added that Hannah was probably going to have difficulty climbing stairs by the time she was 15, Jim had heard enough. He stopped the nurse and asked one simple question, ‘What do we need to know to take care of this baby today.”

Though CF is most often thought of as a lung disease, it is actually a multi-system disorder caused by the production of unusually thick, sticky mucus in the organs of the body. The organs most severely affected are the lungs and the pancreas. In the lungs, the aberrant mucus builds up blocking the airway and harboring dangerous bacteria.

In the pancreas it blocks the passage of digestive enzymes, leaving the body unable to utilize nutrients in food. At the time of Hannah’s birth, the life expectancy for a baby born with CF was just 25 years.
Despite their devastation, the Hensels were determined to give their daughter the best possible chance at a healthy life. To Susan and Jim that meant exercise—and lots of it!

When Susan and Jim met, they were both committed to fitness and knew exercise would always be an important part of their life together. When their first child James was born they included him in their workout regime, pushing him along in a stroller as they ran.

Hannah’s diagnosis only increased their determination to integrate fitness into their family’s life. “We knew that Hannah would need all the physical benefits of running—increased lung capacity, increased cardio/vascular strength. We knew that exercise would strengthen all her body systems.”

By the time Hannah was five, she and her brother were biking along with their parents as they jogged. When she turned seven, she began running as well. Eventually the family was jogging four to eight miles four to five times a week.

“In the winter, when we’d run in the dark, we’d attach reflectors to the children’s heads and backs,” says Susan. Our neighbors called us ‘the healthy family!’” Susan says that Hannah’s doctor, Terence Carey, M.D., was surprised at first that a child with CF was so active “but he always cheered us on.”

Keeping Hannah on her exercise routine wasn’t always easy. She went through a period where she was very unhappy about being made to run. “We’d temper our runs with humor and love,” says Susan, “but we never let up, no matter how many tantrums she had. We knew we were running for her life.”

Jim and Susan’s tenacity paid off beyond even their expectations. Despite the pediatric nurse’s dire prediction, Hannah at age 18 has no trouble bounding up the stairs in her home. Even more remarkably, she is an accomplished varsity athlete, participating in both cross country and track at Union High School.

Her lung capacity is not just normal, it is above normal for a person her age. “Most teenagers with CF have a lung capacity of about 60 percent,” says Susan. “Hannah’s is 108 percent!”

According to Susan, most people with CF look sick. “They are quite thin from the effects of CF on the digestive system and have stunted growth from being malnourished and having poor circulation.” At 5’10’’ and at a healthy, robust weight, Hannah, a lovely young woman with light brown hair and sparkling dark brown eyes, looks to be the picture of health.

Despite Hannah’s appearance and success, the road has never been easy. Chronic lung infections, intermittent IV antibiotic therapy, daily breathing treatments and a number of oral medications are all part of Hannah’s life. When Hannah was on the Jenks America Track Club, she sometimes coughed through entire training sessions.

Susan was sure the other mothers were appalled that she didn’t just take Hannah home. But coughing is exactly what CF patients need to clear the deadly mucus from the lungs. “Even if she was sick, we would still get her out. We would at least have her walk or walk/jog.” Once, when Hannah attended a track meet in Iowa she was on IV antibiotic treatment for a serious lung infection. “We unhooked her so she could run in her event and hooked her back up when she was through!” says Susan.

“Dr. Carey came to Hannah’s state track meet when Hannah was a freshman,” says Susan. That year, Hannah came in 13th overall and Union took the state title. Hannah could hear Dr. Carey cheering for her at the finish!”

Hannah’s plans for the future include joining her brother James on the cross country and track teams at Oklahoma Wesleyan University. James plans on pursuing a career in medicine, specializing in CF.

Hannah hopes to be a teacher some day. But no matter what Hannah’s future holds, she knows that she will always keep running—running for her own life and to inspire others with CF to run for theirs.

Note: Today, due to increased research and the development of new and better drugs, the outlook for a baby born with CF is much better than it was at the time Hannah was born.

The life expectancy for an individual with CF born today is 37 years. “Our goal is to keep her body healthy so that when research improves she can be healthy enough to take advantage of it,” says Susan.

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Categories: Teens, Tweens & Teens