Cystic Fibrosis Foundation – Nebraska Chapter

Troy’s Story

Troy was a normal newborn baby. He weighed in just under 9 pounds, ate all the time and slept when he should. Two weeks after he was born, the pediatrician called and informed his parents that his newborn genetic test had come back positive for cystic fibrosis. The next few days were full of doctors’ appointments, CF education, treatments and new medications. Over the first year of Troy’s life, he experienced twice daily chest therapy, enzymes with every meal and antibiotics for every illness. His parents have learned a lot about the diagnosis and the outlook for medical treatments. Every day is a new challenge to keep him healthy and fit in all the treatments in their already busy lives. One of the most positive outcomes of the diagnosis has been the family’s involvement with the Cystic Fibrosis Foundation. They quickly became involved to spread awareness and raise money for life-saving treatment research. Each year has brought a new breakthrough, and Troy’s family is hopeful that he will live a long, healthy life thanks to those breakthroughs.
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Amy’s Story

CFF_AmyWhen Amy first met her college roommate as a freshman at Penn State, she had no idea what cystic fibrosis (CF) was. However, when she saw all the medication and equipment her roommate, Melissa, came with, she was pretty sure CF was something bad. Amy recalled, “I looked at all of her stuff and thought, ‘this isn’t going to work.’ Melissa had 30-40 pill bottles, a vest that she had to wear for 45 minutes 2-3 times per day to break up mucus in her chest, and a nebulizer (inhaler).”

Amy was right, cystic fibrosis is bad. It’s a disease that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. However, Amy was wrong about Melissa not being fun and they soon became best friends. Melissa’s lungs had already begun to fail at age 18. By the time she was 21, she had to be on portable oxygen at all times. She was able to have a double lung transplant that year and did well for awhile. However, after 18 months, Melissa went downhill. She lost her battle to cystic fibrosis when she was only 23 years old.

Shortly after Melissa’s funeral, Amy joined the national fundraising team for the Cystic Fibrosis Foundation (CFF). A few years later, she met David, who is from Lincoln, NE. He had lost a 33-year-old brother to CF eight months after a lung transplant. They connected and Amy moved to Lincoln with him. They both continue to fight for a cure for the disease that took their loved ones from them. Amy said, “With all of the new drugs available now, there is so much hope. That’s why fundraising is more important than ever, so that we can speed up the discovery of a cure.”

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Ann’s Story

CFF_AnnAmy and Ann (pictured on the right) were close childhood friends whose friendship only grew as they got older. Amy said that Ann was a great inspiration to her because she possessed a positive attitude, despite the fact she lived with Cystic Fibrosis. “Ann had a disease that would make a lot of people spend their days feeling sorry for themselves, but she looked at it as a challenge and broke records and beat the odds.”

As a high school senior, Ann received a track scholarship to Nebraska Wesleyan. After graduating college, Ann married her high school sweetheart, with Amy by her side. The two girls had a dream of moving back to the same town, living next door to each other and raising horses.

When Ann was in her mid-20s, she started getting sicker and sicker and eventually needed a lung transplant, which she got in early winter 2008. But in early summer of the same year, the lungs started to fail, and Ann passed away in July 2008.

Amy got involved with the Cystic Fibrosis Foundation after moving back to Lincoln from Kansas City. “I think it’s important to spread the word and preserve Ann’s legacy. Ann thought she could do anything she wanted to, and she packed everything into 25 years.“

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Paige’s Story

CFF_PaigeAlthough Paige was diagnosed with Cystic Fibrosis (CF) as a baby, it in no way defines her life. Sure, she needs to take digestive enzymes whenever she eats and everyday she must use an inflatable therapy vest for 30 minutes to help loosen and remove the extra mucus that builds up in her lungs. However, all of these things are just a normal part of life for Paige.

Every three months, Paige also visits the Cystic Fibrosis Care Center to monitor her health. Her breathing test is always the best when she’s been running on a regular basis. Paige credits running with helping her to stay so healthy despite having CF. It is definitely something in which she has excelled. She holds a cross country record at her high school and was offered a track scholarship to Concordia Seward. When asked if she had any advice for other young people living with CF, Paige said, “Don’t let it hold you back. Stay active.” She is certainly leading by example.

Paige’s family is thankful to the Cystic Fibrosis Foundation (CFF) for keeping them informed of new medical breakthroughs and are very appreciative of their dedication to finding a cure. They also stay involved in the CFF by attending events, including the annual Cystic Fibrosis walk in Lincoln. Her parents have helped plan the event for the last several years and also sponsor a team for the annual walk.

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