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Magazine: Night Out for Norah

Norah Cooney lives with Cystic Fibrosis (CF), but she doesn't let it dull her sparkle.

The Cooney family is constantly smiling. Many photos of the Northern Kentucky/Greater Cincinnati Agent Marlayna Cooney, her husband Jason, and their two adorable daughters, Adeline and Norah, show grins and fun activities. Norah is a courageous five-year-old who battles Cystic Fibrosis.

As CF is a genetic disease, Marlayna and Jason were both unknowing carriers of the gene that causes it. As we discussed all things Norah over the phone, Marlayna recalled the moment they received the news. “[It] was heartbreaking. We got a call after her first newborn doctor visit that something was wrong with the newborn screen blood test,” she said. “We were in a two-month shock. Then it hit us that we could take one of two paths. We could either be shocked, scared, angry and upset with God, or we could take steps to change the future for her and other children.”
CF isn’t a disease that is seen from the outside. It is completely internal. “We look at her and she’s perfect. But you can’t see all that is going on inside,” Marlayna explained. Norah’s lungs and pancreas are not functioning properly – the disease is chronic and progressive. The life expectancy for those battling CF is 41 years old. “41? I want to double it. I want her to live to 82,” Marlayna stated with fervor. 

In the United States, CF is an orphan disease, meaning it effects a small percentage of the population, and there is no federal funded research. “We decided to take action and fundraise along with other families fighting for medical advancements to find a cure,” Marlayna said.

After only about eight weeks of planning, the first Night out for Norah event was held in 2013 in honor of Norah’s first birthday. They expected it to be a small event, so it was held in basement of St. Patrick Parish in Taylor Mill, Ky., the Cooneys’ home parish. It turned out to be much bigger, as $15,000 was raised that night, all donated to the Cystic Fibrosis Foundation. “Other parents of children with CF came to the event just to support us. We didn’t even know them! But now we have that connection and support each other,” Marlayna said. They grew out of their church basement and now use convention halls. “We have raised $97,000 so far – 2017’s event brought in $21,400! We were very happy because we know this money helps,” she explained.

Norah is very regimented. At five years old, she does 24 minutes of vest therapy paired with two nebulizer treatments every morning, and she repeats it every night. Norah knows her routine and can hook and unhook herself from the treatment machine. Her diet consists of 2,400 calories per day because she needs a BMI of 50% to maintain her weight. She also knows when it’s time for her to take medicine. “If I’m not nearby, she runs down the hallway yelling ‘Mommy, I need a pill, I ate some chocolate’ because she knows her belly will hurt if she doesn’t get pills when she eats.” Marlayna laughed, “We call her spirited. She has so much spunk and can really take care of herself.”

Norah takes 26 pills per day just for her pancreas. “The health of her pancreas is more of a struggle every day,” Marlayna stated. “Her pancreas doesn’t function [correctly] and that is what we need to work so that she grows properly.” 

Marlayna spoke highly of Norah’s connection with her older sister, Adeline. “[They] have a great relationship. Addie protects Norah as much as she can.” Though CF is considered an orphan disease, it is known by many. “We were in a Texas Roadhouse one night, and Addie was about three and a half. While waiting for a table out front, Addie saw three men smoking nearby. She marched right up to them and yelled, ‘My sister can’t breathe smoke in! Stop it!’ One of the men came over to our family and bent down and said to Addie, ‘You speak your mind, just like my daughter,’” Marlayna recalled. When she asked how old his daughter was, he explained that she had passed away at age 19 from CF. “When we told him about Norah, he immediately took money out of his wallet, handed it to us, and said ‘Please put this toward your cause.’ It is moments like those when you feel how connected the CF community is,” she explained.
Jason and Marlayna sign up to run marathons because they want to be role models for their daughter. They hope Norah will run as well, to force her lungs to work as hard as they can. Nineteen family members and friends have completed half marathons in honor of Norah. “It’s a family affair,” Marlayna laughed. “Everyone gets involved.”

General Agent Tom Kaelin (Marlayna’s brother) earned a Richard Tobin Award in 2017, and chose the CF Foundation (care of Night Out for Norah) to receive the money associated with this award, a total of $500. “Her parents are warriors to find a cure not just for her, but for all who have CF,” Tom said. “This is going to happen,” Marlayna stated with determination. “CF is going to be eliminated in our lifetime.” Jason believes, “Without God there would be no science, without science there would be no hope.” This has become their family’s anthem. If it’s up to Norah and her family finding a cure for CF is on the horizon.

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Article by Brittany Hans.

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