While I breathe, I hope
by Joey Benton
Before the 21st century, it was rare for a Cystic Fibrosis patient to see their 30th birthday. Back then, patients weren’t able to experience their own college graduations, weddings or the birth of a child. The world available to patients today is unfathomable to those who lived even as few as 25 years ago. Within this quarter century research and new science have developed at an unimaginable pace: more laughs, more opportunities, more breaths, for lives that were previously expected to not grow old.
These aren’t theoretical or abstract stories, I know because I lived through it. There was a time when college wasn’t guaranteed. Graduating high school wasn’t even able to be taken for granted. I had to have the difficult discussions about potential transplants and having to live in a one story home in case my health drastically declined. The idea of going to college out of state , far from home, felt like pie in the sky.
Over 1,000 miles from home, in Austin I am following my passions to places I never thought they would take me. Currently I am studying architectural engineering in my 3rd year at a world class institution, the University of Texas-Austin. In addition to being a full-time student, I am also serving as the President of my fraternity, Pi Kappa Alpha. At the risk of sounding like a broken record, I must note that the barriers I thought would define my future have been lifted thanks to ground breaking science and researchers. Without an in-patient hospitalization since I’ve started college, I am able to live without those interruptions that used to occur at least thrice a year.
This results in not only days being added to life, but also the improved quality of those hours. The benefits are not solely physically either, the mental effect is immense. Spending long amounts of time in the hospital away from your friends and schooling can be very isolating, especially for a young child. It moves me to imagine children born today with CF who will never understand that feeling. They will never know what it's like to not be able to play freely without care. They will never know what it's like to spend a quarter of your year in a hospital bed. Once a childhood disease that few would survive to adulthood; now doesn’t stop kids from laughing, playing, and breathing.
Thank you to everyone who donates, as you’ve given me a chance to live a life once thought impossible. Thank you to the researchers and scientists who devote their energy and time to work one step closer to a cure.
Dum Spiro Spero- While I breathe, I hope
-- Joey Benton
Connect With Us
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.