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!
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
I do not have CF , but I am the stepfather of a daughter with CF. She wouldn’t use that term since I am the only Dad she knows. Living with a child with CF is a constant mental struggle. There are so many great days opposed to bad days that your mind at times fails to have the ability to settle itself. I have not been in Sklar’s life in its entirety. Her mother went through the back to back hospital visits and the stress of finding out about her illness in the beginning. But I have been here enough years to watch her go from a small struggling CFer to the amazing little girl she is today. I am absolutely in awe of lack of fear for death she has. Whatever it is she has the spirit high enough to lift a whole house. We thought as we watched her grow up over the years that she would eventually do well enough not to have the constant supervision and care. We couldn’t have dreamt in our imaginations just how well she would be doing. It has literally been years since we had a hospital stay. And her lungs are improving. We give a lot of credit to her current condition in our change in lifestyle. We moved from the city, near Flint, Michigan, to up north rural in the woods living. Her spirit, her physical health, her attitude all changed in such a way that we could never change it back. It has been an amazing journey. Times are difficult being the stepparent , but only because of how I feel about her bio dad not caring. It’s a hard struggle with CF , but its worth every second. Summer 2015 family went to Give Kids The World in Orlando and had the times of our lives !!! Thanks GKTW
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