This is what it looks like to have CF. Yes, there are struggles, hospitalizations, illnesses and surgeries. There is also a lot of hope for a long, bright future!
My daughter Graysen was diagnosed “late” at 10 months old after an intense beginning of life. She was a preemie born at 34 weeks old and was in the NICU for 17 days and even with the NICU stay, she was not diagnosed with CF until after 2 inconclusive newborn screen test and many other tests. Finally, after RSV and failure to thrive, her pediatrician went back to CF and decided to get a definitive answer if CF was causing her issues. Sure enough after the sweat test and genetic testing, she was diagnosed at 10 months. Even though it was a very difficult diagnosis, it was helpful to know what we were up against and how to progress from there. Now she is a thriving 3 year old with little to no problems, who has caught up developmentally and physically with her peers. She is in preschool and loving every minute of school, friends, soccer, dance and taekwondo. I try not to limit her time or keep her in a bubble and with her daily treatments, she continues to thrive and grow.
– Hayley, NC
As a young boy growing up I always had breathing problems. My parents said I had Asthma and was treated for that on a daily basis but I still had many health issues. My mother who was a nurse saw that I got the medical care. I was tested with a sweat gland test but passed . Not until later in life and after Military Service and moving to Austin did I find out what I really had. For many years I just thought Asthma was the problem. At the age of 40 I was feeling ill and went to the VA to see a Doctor; when he walked into the room he heard me cough and said to me, ” I think you might have CF.” I did not know what he was talking about. He took blood and sent it off to the Mayo Clinic and I found out two weeks later that I had CF. That moment now put a name to the enemy and I could fight it. I have been blessed with great doctors and support. Life with CF has changed me, as I get older PFT’s have gone down and I have to make adjustments, but there is light at the end of the tunnel. The support systems that are in place for CF families and PTs are wonderful. Prayers and Blessings to all!
– Ron, Leander, TX
The initials “CF” have forever changed our lives. The highs and lows make up our story. We have a wonderful group that dedicates each and everyday to make my son the healthiest version of himself. Teachers, nurses, doctors, pharmacists, RTs, therapists and of course family and friends.
As my child is aging, I’ve noticed CF is always in the background and his understanding of the disease makes it more difficult to bear. Hope, grace and peace are my daily prayers for my family and others affected by this game changer.
It’s not the life we chose, but it has grounded and changed my heart forever. The pride and love I have for our family is what keeps me going– giggles, tears and emotions that I didn’t know existed.
– Kelly, Texas
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