My mom was always my biggest advocate and most selfless caretaker, but she went above and beyond when she also took my friend under her wing.
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When my wife and I learned that our son, Benny, has cystic fibrosis, we were concerned about how we would fit his treatments and care into our daily lives. We are grateful to have not needed to make many major changes like we anticipated, thanks to having a village around us and finding ways to make treatment time more fun.
Learning that my son, Rowland, has two rare cystic fibrosis variants and is currently unable to access highly effective modulator therapies was emotionally challenging and isolating for me. Then, I was introduced to another mom who could truly understand and relate to our experience. I am so grateful for not only the support we can provide to each other, but also for the friendship that grew from our connection.
The Cystic Fibrosis Foundation is providing additional funds to TB Alliance to advance the development of a compound that could be used to treat infections caused by nontuberculous mycobacteria.
Life with cystic fibrosis can come with many recovery days. But it’s hard for me to avoid feeling guilty when I need time to rest and recharge. Working harder to be more productive and make up for the time I lost at work and with family while resting often leads me right back to my couch and needing to take another day to rest.
My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.
Since my daughter, Kinley’s, cystic fibrosis diagnosis, I have come to rely on her care team. We have become a true team in Kinley’s care.
Although I admired bodybuilders when I was growing up, I thought pumping iron and building muscle was impossible with cystic fibrosis — so I didn’t even try. After a hospitalization, my passion for fitness was rekindled and I discovered I could build muscle mass and improve my health.
We’re highlighting three creators who are helping raise cystic fibrosis awareness. They’re voicing the variety of ways that people experience the disease by sharing a part of their life through their works.
My wife and I knew that following our dream of having children would be difficult, but we would do whatever it takes to grow our family. Despite the challenges we’ve experienced on our in-vitro fertilization (IVF) journey, we will continue to fight to make our dream a reality.