Joanna Rodriguez: In memory of my brother, join me to mark Cystic Fibrosis Awareness Month

Every May, for as long as I can remember, I’ve marked Cystic Fibrosis Awareness Month.

My youngest brother Daniel Quesada was diagnosed with CF in 2001, but this year will be the first CF Awareness Month without him. He died from cystic fibrosis complications on September 25, 2019, at the age of 18.

Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.

While CF patients have benefited from substantial and groundbreaking scientific research and treatments that are improving quality of life and extending life expectancy, there is still no cure.

In 2018, the median age of death for cystic fibrosis patients in the United States was 31, according to data from the Cystic Fibrosis Foundation Patient Registry.

For most of his life, the outside world didn’t really see my brother Daniel as a sick kid. He played pee-wee football and T-ball.

Eventually, he found a love for cross-country running, where he would journey from runner to “Coach DQ” as his health prohibited him from competing. He loved the outdoors and made friends hunting and fishing across the country in places like Florida, South Carolina, Alabama, Idaho, and even Alaska.

He was an honor student, a proud graduate of Christopher Columbus High School in South Florida and had been accepted to the University of Florida.

But inside our home, Daniel’s disease was a central part of his daily life.

Days began and ended with 2-3 hours of breathing treatments and physiotherapy to loosen up the extra thick mucus trapped in his lungs. Each meal was accompanied by dozens of pills to help him gain weight, hold off infections, or address complications and side effects that would pop up in the course of his treatment.

As he got older and sicker, his routine also included up to eight hours of IV antibiotics per day — which meant doing them from home or on the drives to and from school or, on a fun day, from a wheelchair waiting in line at Disney World.

At least once a year — but often 3 to 5 times a year — he’d be pulled out of school for weeklong “tuneups” at our local children’s hospital where he’d undergo intense therapies, blood work, scans, testing and evaluations.

As his lung infections worsened, he’d travel to the National Institutes of Health in Bethesda, Maryland and UF Shands Hospital in Gainesville for appointments with specialists.

And in the last six months of his life, Daniel’s fight against Cystic Fibrosis forced him to leave the only home he’d ever known in South Florida to move to Chapel Hill, North Carolina where he would die waiting for a double lung transplant he desperately needed.

The pain of losing any sibling is indescribable. But the pain of losing a sibling to cystic fibrosis is especially unique.

With each breath we take after our siblings are gone, we remember that — for however long we were lucky enough to have them — our brother or sister fought for every single breath until their last.

The knowledge of their fight inspires us.

Each breath we take is filled with a complicated combination of grief for our lost sibling, gratitude for the breaths they did take, and hope that we can turn their suffering into a better future for other CF patients.

It’s in living with that grief now I‘m more committed than ever to raising awareness and supporting the continued work of the Cystic Fibrosis Foundation.

Typically, throughout April and May, local CF Foundation chapters across the country hold their annual Great Strides fundraisers. Unfortunately, the COVID-19 pandemic forced cancellations of many of these events. But CF patients and families are still relying on the lifesaving work of the Foundation now more than ever.

With your help, we can move closer to ensuring no more siblings, parents, spouses, or children have to know the pain of losing their loved ones to cystic fibrosis.

This May, in honor of CF Awareness Month, please consider supporting the fight against cystic fibrosis by making a donation at runningwithdanny.org or fightcf.cff.org/goto/RWD_Joanna.

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Joanna Rodriguez is a member of the Cystic Fibrosis Foundation’s Tomorrow’s Leaders program, a 2017 Metro DC CF Foundation’s Finest honoree, and a board member of the South Florida-based 501 (c)(3) Running With Danny — founded in honor of her brother Daniel Quesada who lost his battle with cystic fibrosis in 2019.