It was an incredible shock 15 years ago when I learned of my granddaughters’ cystic fibrosis diagnosis. Tess was just shy of four years old and Fiona shy of one year. I spent hours on the computer trying to learn as much as I could. The news was daunting and frightening, but even 15 years ago there was a ray of hope in all this information I was trying to digest. There was news of new medications that were developed through the Cystic Fibrosis Foundation research and there was so much hope in the pipeline.
My granddaughters lived out of state, but I wanted to help so I started volunteering at the Chicago chapter. I have met parents, grandparents, and those who were fighting CF. I have also developed a greater understanding of CF and the toll it takes on families. It continues to amaze me how hopeful these families are and how hard they work to support CFF in its mission for an eventual cure. The Foundation’s energy, hard work, and attitude is contagious to all who get involved. I have met volunteers who have no personal connection to CF who chose to volunteer with the Foundation just because everyone is so friendly.
Tess and Fiona are fortunate that they do not have pancreatic involvement, but they still have some battles to win. They have two to four breathing treatments a day as well as different medicines to take. The clinic and their parents encouraged them to take responsibility for their treatments early on. The goal was that eventually they would be completely responsible for their medications. They responded well to this expectation and were even able to go to camps in the summer. Tess is now a sophomore in college and Fiona a sophomore in High School.
I am so proud of them and very hopeful that they will have a long and healthy future, thanks in large part to the efforts of the Foundation to continue to improve medications and eventually find a cure. There are so many ways to help this wonderful organization. Increasing awareness of the disease help spreads the word which leads to donations and fundraising. Becoming an advocate helps to educate government officials on CF and make them aware of laws that support our cause. Finally, participating in the events that the chapter offers is so much fun!