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Denver CF Climb

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Raised: $10,000.00

Goal: $500.00

My CF Climb Story

  • Almost 17 Years Old!!
  • She has come a long way!!

It’s time for the annual CF fundraising Climb and it has been almost 17 years since my daughter Kennedy was born with Cystic Fibrosis (CF).  As some of you knowCF has been part of my life for as long as I can remember, I grew up in a small town of around 3000 people.  One of the kids in the only elementary school had CF, we would become and remain best friends until he passed away when we were 26.  He had end-stage lung disease and died undergoing a lung transplant.

Years later, my daughter would be diagnosed with CF when she was just two weeks old.  My shock quickly gave way to guilt, fear, and more fear.  Guilt over passing on this defective gene, fear of knowing how much pain and suffering she would endure, and fear of knowing that I would likely outlive her.  I remember thinking that I wasn't strong enough to watch another person I loved loose their life to CF.  At that time her life expectancy was 28 years old.

After 17 years of Climbs, Walks, Galas & other fundraisers, I now have hope that Kennedy will live a long life due to some breakthrough drugs (like Trikafta) and therapies that have become possible thanks to CFF research This has only been possible due to donations from people like you, who have given what they can spare to help kids, like our daughter Kennedy, literally BREATHE easier and have hope to live a longer healthier life. 

Kennedy participated in a drug trial for a breakthrough drug called Trikafta.  Trikafta is taken twice daily and is a game-changer.  It has improved her lung function, her pancreas ability to absorption nutrients which has allowed her to gain weight. Trikafta is not a cure, so she continues to do all her therapies and other medications.  We continue to see the awesome pulmonary team at Children’s Hospital quarterly to make sure she stays that way!

These days my fear is less in part because of Trikafta, she is living her best life as a teenager and has a longer and brighter future.  Kennedy just finished her junior year in H.S and took the ACT. She continues to play soccer, is studying for her CNA boards, and has been lifeguarding & babysitting.  Kennedy has maintained a strong GPA, with goal of attending medical school one day. She still spends 30 minutes every morning and night doing inhaled lung therapies with vibrating vest to loosen her mucus in her lungs. She still also takes over 32 pills every day which includes digestive enzymes every time she eats, and liver medication to treat her CF related liver disease. 

About Cystic Fibrosis:  It is a genetic disease that causes mucus to be thicker than normal and affects the lungs, digestive system, pancreas and even the liver.  This thicker mucus caused the lungs to be prone to chronic infection, eventually causing the loss of lung function and leading to lung transplants. The mucus blocks the delivery of digestive enzymes from pancreas to the intestines, which causes malabsorption and malnutrition.  Those with CF also can develop CF related diabetes or liver disease.  The average life expectancy 30 years ago was 12 years old, but with all the therapies and medications developed it has been extended to over 40 years old. Trikafta was just approved in June 2021 for 6- to 11-year-olds, which will help even more children with CF, but there are many children that these drugs won’t help yet, due to their specific CF mutations.   We CLIMB so one day every child & adult with CF can live a long, healthy life

Please Cut and Paste the following link into your browser:

https://fightcf.cff.org/site/TR/Climb/22_Colorado_Denver?px=3318632&pg=personal&fr_id=8775

 

 

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