For nearly two decades, Jodi Marquez-Klarenbeek's life consisted of pills, breathing treatments, doctor appointments and contracting various infections. As she got older, those infections became deeper and longer lasting, and the antibiotics used to fight off the infections became stronger. After her seventeenth birthday, her health decline began to speed up.
By age 22, she had silently given up many of the dreams that her friends were just beginning to plan. “The treatments felt like Band-Aids covering up a scar,” Jodi said. “Although each visit got me to feeling better, I never felt as good as before.”
Then, in 2013, Jodi experienced a life-changing event that would turn her world around. She was asked to participate in a clinical trial for a drug that would target the underlying genetic cause of the CF mutations she carried.
The results on her overall health were astonishing. Within two weeks of starting the clinical trial, Jodi gained 15 pounds -- a weight gain that was vital to her health. Along with the extra pounds, her appetite increased and her lung capacity felt like it was larger than life. She was finally able to walk -- and even run -- without her lungs tiring before her legs.
And equally important, her zest for life and hope for her future were restored. “I was able to embrace the most normal life I had lived in years. I got back my independence and finally felt like less of a burden. All the things that I never thought were possible were falling into place,” said Jodi.
Jodi can now focus on milestones that she never thought were a possibility, like marrying the man of her dreams.
“Today, I'm planning a future full of years as a wife and a mother -- titles which once didn't hold a place on my timeline.”
The drug that helped Jodi get back on her feet, Orkambi, was approved by the U.S. Food and Drug Administration in July 2015 for people with CF, ages 12 and up, who have two copies of the delta-F508 mutation. Orkambi was funded through the Cystic Fibrosis Foundation, the global leader in the search for a cure for CF.
Jodi would not have gotten to this point without the support of all those who have worked tirelessly to raise awareness and funds for cystic fibrosis research and care. “I know that this drug is not a cure, but it has given me the best two years of my life. To state it as simply as possible, I have been given a second chance at life.”
As Giving Tuesday approaches, consider donating to an organization that is adding years to the lives of people with CF like Jodi. Please consider giving $5, $50 or $500, so that you can make a difference.
