My Great Strides Story
Kayla Keepper
Kayla Keepper
Nolen's story. He was born November 2015, by 5 days old we got the call his newborn screening came back showing the markers of Cystic Fibrosis. We made our way to meet the Cystic Fibrosis team that we didn't realize would become part of our family soon. From 2015-2020 Nolen maintain "gray area" results and no signs of Cystic Fibrosis progression but was found to have two main mutating genes. In the end of 2021 we noticed some changes in Nolen's physical activities so we had CT scans, we found his lungs having taken progression and we had to make a quick decision to start regimens for him or we were given the option for Trikafta. His sweat test results were 82/96, his last results after 2 years of Trikafta is around 33/33. Nolen has been carrying on with a healthy life since Trikafta but in the journey we had his older brother tested who was found to be a carrier as well. We walk to hope to find a cure, we walk to help raise money for those who struggle to get the medication that Nolen's life has been changed by.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward - a cure for everyone with CF.
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