For Ben. And for all who fight the CF battle.
Stephanie Hawkins
Stephanie Hawkins
Ben was diagnosed with cystic fibrosis (CF) at six weeks old. We were devastated. We didn't know a lot about what that would mean for his life or ours, but we knew we would do anything it took to protect our baby boy.
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.
Ben has been spared (so far) many of the more difficult challenges that can come with fighting CF (like multiple lung infections requiring strong antibiotics and causing irreversible scarring, debilitating GI issues, diabetes, organ transplant, and more), but his own CF fight hasn't been without its drawbacks.
He has had two hospital admissions--one requiring a PICC line and IV antibiotics, and the other for painful pancreatitis. He spends one hour of every day hooked up to his airway clearance machine (his "vest") to prevent disease progression--and that's just when he's healthy. When he is sick, that time is doubled.
Ben is fortunate that he qualifies for lifesaving medication -- a CFTR modulator called Trikafta -- but with that comes other issues, like elevated liver enzymes and other health risks. And some of his friends don't even qualify for this type of therapy.
We fight for him. And we fight for them, too. Until it's done. Until this disease no longer exists. Until CF stands for CURE FOUND.
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.
On behalf of Ben, his parents, and his sister, THANK YOU. We couldn't do this without you.
(Want to show off your connection to our cause with your very own Ben's Brigade t-shirt or hoodie? Visit bensbrigade.com/gear to purchase yours today. All proceeds come here to further support our team.)
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.
Ben has been spared (so far) many of the more difficult challenges that can come with fighting CF (like multiple lung infections requiring strong antibiotics and causing irreversible scarring, debilitating GI issues, diabetes, organ transplant, and more), but his own CF fight hasn't been without its drawbacks.
He has had two hospital admissions--one requiring a PICC line and IV antibiotics, and the other for painful pancreatitis. He spends one hour of every day hooked up to his airway clearance machine (his "vest") to prevent disease progression--and that's just when he's healthy. When he is sick, that time is doubled.
Ben is fortunate that he qualifies for lifesaving medication -- a CFTR modulator called Trikafta -- but with that comes other issues, like elevated liver enzymes and other health risks. And some of his friends don't even qualify for this type of therapy.
We fight for him. And we fight for them, too. Until it's done. Until this disease no longer exists. Until CF stands for CURE FOUND.
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.
On behalf of Ben, his parents, and his sister, THANK YOU. We couldn't do this without you.
(Want to show off your connection to our cause with your very own Ben's Brigade t-shirt or hoodie? Visit bensbrigade.com/gear to purchase yours today. All proceeds come here to further support our team.)
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