Borrowed Time

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At that time, the average life expectancy for a child with cystic fibrosis was 11. Brooke was 7.

"That absolutely devastated us," says Kim. "It was overwhelming. First, when you hear news like that, you go to the very end. You go to the worst part of it. It took a while to go, 'Wait a minute, this doesn't have to be catastrophic.'"

Kim and Walter made the decision to raise all three of their kids the same way, with a strong focus on quality of life.

"We understood that this was a terminal disease. We didn't know when [the children could die], but it was labeled terminal," Walter says. "I didn't focus on the death part. I had an awareness, but I believe we made the decision, 'Let's focus on what we have today.'"

Kim and Walter put up a strong front. They enrolled all three of their kids in after-school sports — tennis, golf, soccer, swimming, ballet for Brooke — anything they could think of to keep the kids active and healthy. Family pictures show happy kids: A young, lanky Jordan squints into the sun, his blond hair flopping in his face as he shoots hoops. Another photo, this one a staged studio shot, shows the three kids posed from oldest to youngest, identical blue eyes focused on the cameras. The boys look almost like twins, same haircuts, same expression, while Brooke again looks too serious for an 8-year-old, one year after her diagnosis.

There were issues to confront. Kim, for one, had to deal with anger and frustration toward the doctor in Washington who thought about testing Brooke for cystic fibrosis but did not. Had Brooke's CF been diagnosed earlier, the child would have had to endure far fewer invasive hospital tests and could have begun treatment for her digestive problems earlier.

"I just couldn't believe the pediatrician would have dictated that note in a file and never said to us, 'This is what we're thinking,'" she says. "I made an appointment to see him and told him, we had two more children. If you had diagnosed her, we would not have had these other two children. . . . That's not the issue — we love these boys — but I felt it was a failure on his part."

No matter how normal the Sterlings tried to make life for their kids, it wasn't. There were hospitalizations. There were routine lung function tests to take, strict diets to follow, enzymes and pills to swallow. And worst of all, there were late-night coughing attacks. Walter III shared a room with Jordan as a child and remembers that he would "cough all night long. He would cough up so much mucus and he'd be embarrassed at the amount so he'd force himself to swallow it."

Brooke says her biggest struggle as a child — one that has continued into her adult life — was trying to maintain a healthy body weight. She recalls pink packets of "vile"-tasting digestive enzymes poured onto food or into her drinks, and glasses of orange juice spiked with oil just to add calories.

Still, neither Brooke nor Jordan recalls feeling particularly different or "sick" as children.

"I don't think I consciously thought about CF at all," Brooke says. "Maybe subliminally. It was just kids growing up, very matter-of-fact. You have lunch, you have dinner, you wear pajamas to bed. Every few months you go into the CF clinic and you do this regimen and you do these therapies in between and you call it a day. I think about my health so much more now than I ever did as a kid. I think about it all day long on some level."

Brooke's experience with CF turned out totally different from her brother's. Brooke left home for boarding school in California her junior year of high school and then attended Pitzer College in southern California, where she studied social work and lived her life at "mach seven," as she puts it — traveling to 13 different countries, working full-time as a social worker, getting a master's degree from Columbia University in New York City, becoming executive director in charge of fund raising and staff at The Wellness Community, a nonprofit cancer support organization in the Valley. She says she paid very little attention to her cystic fibrosis in her younger years.

"Honestly, I would have to say that CF did not catch up with me until my very late 20s. That's when I started noticing my margin had significantly closed in."

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Megan Irwin
Contact: Megan Irwin