My Great Strides Story
Katie Miles
Fundraising for Louisville Great Strides 2026
Katie Miles
Harper is 7 years old, in the first grade and is running on equal parts of sass, spunk and sweetness. She was tested for Cystic Fibrosis through a sweat test at two weeks old and diagnosed at five weeks. It was also confirmed that Harper was pancreas insufficient (PI). Being pancreas insufficient is common for those who have the double DeltaF508 mutation. This meaning, her pancreas does not release enough enzymes to digest the fats, proteins and most carbohydrates. Because of this, Harper has been taking a medication called Creon since she was five weeks old. Creon is a medication that replaces enzymes that her pancreas lacks to produce. We have had very few set backs related to CF throughout Harper's life and we are immensely grateful for that. With Harper having the DDF508 mutation, she was approved for a medication called Alyftrek. Alyftrek treats the mutation causing Cystic Fibrosis. It not only improves symptoms but slows down the progression of the disease overall. It has been a breakthrough for people with Cystic Fibrosis, allowing them to plan on living longer and to participate in life more fully.
The hope that we have for Harper to live not just a full life but one with health is rooted in the work that the Cystic Fibrosis Foundation is doing. The C.F.F. is the driving force behind the life-saving research and medications. With the money that is raised by such events as this, it helps further research and allows families that are affected by this disease to have continued access to treatments, medications and medical professionals. We are encouraged by all the progress and advances in the research of Cystic Fibrosis and hope that one day a cure is found!
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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