My Great Strides Story
Kendra Taylor
Kendra Taylor
Hello!
I am Kendra!
( most commonly referred to as Mom)
Rebecca, the reason we walk this year and raise funds every year, is my daughter.
Her story began in 2014 with complications at birth resulting in an emergent C-section, and Rebecca being sent to our nearest CHAD. Less than 24hrs old she had surgery to remove half of her small intestine, due to meconium ileus. (The intestine had twisted around itself and died. They were able to repair and reconnect the small intestine.) Rebecca had a collapsed lung that had resolved within her first week of her 2 week NICU stay. She is pancreatic insufficient and will require medications with her food, her pancreas doesn’t make enough enzymes to digest on her own.
Genes!
Rebecca has deltaF508, that means she has 2 copies of the most common CF gene mutation. This also means she has been fortunate enough to receive medications like Orkambi & Trikafta.
How?
I am Kendra!
( most commonly referred to as Mom)
Rebecca, the reason we walk this year and raise funds every year, is my daughter.
Her story began in 2014 with complications at birth resulting in an emergent C-section, and Rebecca being sent to our nearest CHAD. Less than 24hrs old she had surgery to remove half of her small intestine, due to meconium ileus. (The intestine had twisted around itself and died. They were able to repair and reconnect the small intestine.) Rebecca had a collapsed lung that had resolved within her first week of her 2 week NICU stay. She is pancreatic insufficient and will require medications with her food, her pancreas doesn’t make enough enzymes to digest on her own.
Genes!
Rebecca has deltaF508, that means she has 2 copies of the most common CF gene mutation. This also means she has been fortunate enough to receive medications like Orkambi & Trikafta.
How?
Orkambi is made up of lumacaftor and ivacaftor, which work on certain defects of the CFTR protein at the cellular level.
How does it work?
Trikafta is Cystic Fibrosis Transmembrane Conductance Regulator(CFTR) used to correct the defect in the proteins of the cell.
Its purpose is to regulate cell proteins, opening or bringing them to the surface.
Gene Therapy?
Those medications treat the underlying cause of CF. They may TREAT, which we are so grateful for but we fundraise for CF to stand for CURE FOUND.
Trikafta is Cystic Fibrosis Transmembrane Conductance Regulator(CFTR) used to correct the defect in the proteins of the cell.
Its purpose is to regulate cell proteins, opening or bringing them to the surface.
Gene Therapy?
Those medications treat the underlying cause of CF. They may TREAT, which we are so grateful for but we fundraise for CF to stand for CURE FOUND.
Does everyone have access to these medications?
Unfortunately no, they do not and without Great Strides and fundraising we could not either.
this is why fundraising, education, and research is so important.
How can you make an impact?
Donate, fundraise, share, educate and always be kind.
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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