I’ll never forget the pain I felt learning of my son Rowland’s cystic fibrosis diagnosis at six months old. I’ll never forget the uncertainty I felt, wondering if Rowland would ever have access to specialized treatments that target the underlying cause of CF, called modulators. I’ll never forget the fear that Rowland’s life expectancy could be cut short, and that his life could be complicated by long hospitalizations.
 

Then Rowland had his first hospitalization at one year old for “presumed pancreatitis,” and I thought, well, I guess this is the start of it all. I had heard about people with cystic fibrosis being in and out of the hospital, fighting for their health. I mourned what I thought our life would look like, and what was to come.
 

Cystic fibrosis is a genetic disease that affects the lungs, pancreas, and other organs. It is progressive, meaning it gets worse over time. CF used to be considered a childhood disease because many people living with CF didn’t make it into adulthood. Thankfully, life expectancy has increased dramatically due to scientific advancements in CF research, much of which has been funded by the Cystic Fibrosis Foundation.
 

When Rowland was two years and four months old, he gained access to a modulator—a treatment that targets the underlying cause of the disease and can improve both longevity and quality of life. There was nothing I wanted more for him than this, and his symptoms improved dramatically. Thanks to modulators, along with the three other medications Rowland takes twice daily (this number used to be eight!), Rowland is currently thriving. My hope—and expectation—is that he will continue to live a long and healthy life.
 

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