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Frankfort mom creates recipes for cystic fibrosis patients

ErBurns her sDean 4 prepare food their Frankfort home for their evening meal. Burns said she cooks for Dean's high-fhigh-calorie

Erin Burns and her son, Dean, 4, prepare food in their Frankfort home for their evening meal. Burns said she cooks for Dean's high-fat, high-calorie needs as a cystic fibrosis patient, while also relying on a plant-based diet to maintain a healthy lifestyle for the entire family. | Ginger Brashinger/For Sun-Times Media

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Updated: July 10, 2014 2:12AM



Cooking against the grain of conventional standards for a healthy American diet became Frankfort resident Erin Burns’ challenge when her fourth child was born with cystic fibrosis.

As a cystic fibrosis patient, Dean Burns, 4, doesn’t produce digestive enzymes normally, Burns said. He must take in about 150 percent of the calories he actually needs in order to process 100 percent of the food’s nutrients.

The life-threatening genetic disease primarily affects the lungs and digestive system, according to the Cystic Fibrosis Foundation. An estimated 30,000 children and adults in the United States have it, according to the foundation.

Despite being totally unprepared for the diagnosis, Burns, 37, said when she and her husband Jim first learned about the dietary needs of a cystic fibrosis patient — a diet which Dean had to begin as he came out of infancy — they knew they could “definitely do it.”

“You can add sour cream, you can add butter. That’s kind of what your clinic team will tell you,” Burns said.

But while she wanted to meet Dean’s needs at family meals, Burns knew it was important that their older children — Cali, 10; Owen, 8, and Evie, 6 — share the same family meals with their health in mind, too.

“To try to find something that was going to cater to cystic fibrosis patients that was high-fat, high-calorie and also healthy is not the easiest thing to find always,” she said.

And there were very limited resources to tap into, Burns said.

Because the entire extended family knew of Dean’s diagnosis, it wasn’t surprising when Dean’s great uncle emailed Erin to tell her in 2011 about the launch of a new website, www.Chef4CF.com, hosted by AbbVie, a global biopharmaceutical company.

A cystic fibrosis recipe contest was being held to launch the website, and Uncle Pete said he knew about Erin’s cystic fibrosis advocacy and her love of cooking and thought it would be a perfect fit.

He was right.

Burns’ “Quick and Colorful Chicken Salad” was a contest winner, and she since has added “Fun Taco Boats” to the online recipe book.

Burns is an avid fan of the site.

“There is not one resource besides this website that we have found that is specific to cystic fibrosis families or cystic fibrosis patients,” Burns said “The cool thing about this is that it focuses on high-fat, high-calories recipes which the rest of the world is just not interested in.”

Since sending in her winning recipe in 2011, Burns said the family has made some changes in their diets, based on research that she and her husband have done, as well as some personal discoveries.

When Dean was 2, Erin and Jim Burns found that “everything that we kept researching (about good health) went back to a plant-based diet,” she said.

The couple didn’t want to try out a new diet on Dean or the rest of the family without first trying it themselves. After a monthlong plant-based-diet, Erin Burns said, “We loved it so much we never went back.

“It was an energy level; it was just feeling better,” Burns said. “My husband is a triathlete, and he felt better when he was running, biking, swimming.”

She said despite being in top condition prior to the new diet, Jim, 37, couldn’t lose the “last couple of pounds” he needed to lose until they tried 28 days of plant-based meals.

“This kind of was the kicker that did it,” Burns said.

Burns has tailored her recipes to fit the family’s evolving diet.

Her new Chef4CF taco boat recipe is a good fit for cystic fibrosis patients, as well as anyone who loves tacos with or without meat, Burns said. Modifications for her own family include lentils to replace the meat and cashew cream rather than sour cream, for example.

Healthier eating all around has become a family affair, Burns said.

“The first thing we did for the kids in collaboration with what we were doing was to reduce as much processed food as we could in the house,” Burns said.

Despite the busy lifestyle of a family of six with four active children and two working parents, the payoff for taking the time to make dietary changes has been worth it.

“I have, I really have (noticed a difference),” Burns said. “We don’t go to the doctor as much for illnesses. I’ve noticed their overall health improved.”

Burns said that includes Dean’s symptoms, especially less coughing after the family substituted dairy milk with almond milk.

“The processed food was a big problem for us. I was being lazy, just taking stuff out of a box — a bag of chips here and there,” Burns said. “I can control it at home so I’m not as strict with it when we go somewhere else. They eat hot dogs at the football games. They’re kids.”

Burns plans to add more recipes to Chef4CF and possibly work on a cystic fibrosis cookbook in the future, something her friends have urged her to do.

For now, she’ll continue the family’s most important goal: raising a family of healthy kids.

The CFChef program is an online nutrition resource that allows those touched by cystic fibrosis to share and receive support, recipes and meal tips, according to the website, www.Chef4CF.com.



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