CF Organization Helping Families Breathe Easier

Written by Amy Palser

Red Carpet Affair Raising Funds to Support Cystic Fibrosis Patients and their Parents

As the mother of a child with cystic fibrosis, Stacy Wessley of Wichita knows the burden CF can be on families. Daily treatments are time-consuming, medication is expensive and hospital stays are common — all of which take an emotional and financial toll.

“It’s definitely a family disease because the whole family feels the effects,” said Stacy, whose daughter, Natalie, 17, was born with CF. The genetic disorder affects the lungs, pancreas and other organs with an overproduction of thick and sticky mucus. In the lungs, mucus clogs airways and traps germs, leading to infections and other complications, so minimizing contact with germs is a top concern for people with CF.

Natalie is a social, active junior at Maize South High School who is thriving despite her CF diagnosis. But Stacy’s No. 1 job is to keep Natalie healthy with daily medication, breathing treatments, and a vest she wears that vibrates the chest to thin and loosen mucus.

“Self-care, hygiene and germ-prevention are key,” Stacy said. “Natalie’s missed 20 days of school so far this year fighting viruses.” CF patients can also end up in the hospital for one to three weeks at a time for a lung “tune-up,” resulting in missed work or school and major medical bills. Because she knows the hardships so well, Stacy is working to help local families shoulder the burden of CF. Her organization, Creating Tomorrows, raises money to help offset costs for CF patients. “We’ve always been big in the local chapter of CF Foundation and helping to raise money for a cure, but we thought it would be beneficial and amazing to help families with the financial burden.”

After starting Creating Tomorrows in 2018, Stacy organized the group’s first fundraising event in 2019, the Red Carpet Affair, which sold out. Funds raised at the event helped pay for medical bills for a college student with CF, and for a Derby family whose adolescent daughter with CF has been in and out of the hospital frequently. They’ve also hosted two pickleball tournaments to help other local families in need.

“It is an amazing feeling to be able to surprise and bless these families,” Stacy said. “It’s really important to help families with these expenses so their kids can live a longer life and a higher quality of life.”

This year’s Red Carpet Affair is April 14 at Mark Arts. The girls’ night out event features photos on the red carpet, a fashion show and shopping with Wicked Stitch. Guests will enjoy drinks and dinner. Jemelle Holopirek will be the evening’s emcee. Stacy’s youngest daughter, Natalie, will be speaking, and another incredible speaker is in the works. There will also be silent and live auctions.

While the goal of Creating Tomorrows is to provide emotional and financial support to local families dealing with CF, Stacy said she continues to partner with the local chapter of CF Foundation, whose focus is funding scientific research. “We feel there is such a big benefit to coordinating with them to find a cure,” she said. And advancements are happening: Recently the FDA approved a new medication that helps turn off the defective gene that causes CF. Natalie began taking the drug in December 2019 and has experienced improvement in her overall health. “I am so passionate about my daughter and this disease and helping people faced with this disease,” Stacy said. “My goal is to help every single family in Wichita that is affected by cystic fibrosis at some point. This organization will not stop until a cure is found.”

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