Cystic fibrosis has been a very big part of my life since 1965, when my 4-year-old son was first diagnosed with this terrible disease. I had never even heard of it before. I was 28 years old then. 

There have been so many changes, improvements, and hope for the future since my son Grady was first diagnosed. When he was born in 1962, CF was thought of as a childhood disease, and most children did not live long enough to start school. The CF gene had not even been isolated yet. My son showed signs of having CF as a baby, but they were not recognized by his pediatrician. He was normal weight, but he often ran a fever and coughed a lot. The fever would go down but soon be back. I was a new, young mother and listened to the doctor. He said it was just allergies, and he would get over it.

Then one day, Grady became very sick with an extremely high fever. The pediatrician put him in the hospital for five days without running any tests. He said it was just a virus. When we came home, I called another pediatrician that a friend had recommended. As soon as he examined Grady and got his history, the doctor ordered a sweat test which was positive for CF. This doctor was much more experienced and had run a CF clinic in his younger days. Grady thrived under his care, and he also sent Grady up to the National Institutes of Health CF Clinic in Bethesda, Maryland. 

That was the beginning of many visits to the NIH, every six months for the rest of his life. I drove him to each visit until he started college, and then as an adult, he went alone. The care team there was very interested in why he lived so much longer than most, and they followed him as a patient for the rest of his life. 

At that time, it was recommended for CF patients to sleep every night in a mist tent. Grady did that for five years from age 5 to 10. At that time, he and his younger brother shared a bedroom. Imagine a young child having to crawl in a tent that covered his whole upper body every night to be zipped up, while his brother slept beside him in his nice bed. 

Grady asked me once why he had to sleep in the tent, and I responded that you have cystic fibrosis and your brother doesn't — it is helping you stay well. He thought for a minute and then said OK. He was such a brave child and handled everything that came along with quiet acceptance. 

It turns out that the mist tent did not help, but could actually cause more infection from bacteria, because no matter how well I cleaned it every day, there was no way to keep the tent sterile. After he had slept in it every night for five years, we were told not to use it anymore. Unfortunately, there was a lot of trial and error in treatment back in those days. 

I have so many stories about how Grady lived his life and how he handled triumphs and setbacks along the way that I hope I can share more about him again sometime. He accomplished more in his 28 years than many do in a long lifetime. He met every challenge head on and never gave up. He will always be my hero. 

Now fast forward to 2013, 22 years after my son had died at the age of 28 from cystic fibrosis. After unknowingly living with this disease for 76 years, l was also diagnosed with cystic fibrosis. I will turn 88 years old this July.

Over the years, since I was a child, I had a continuous cough and digestion problems but never as severe as Grady. I would think sometimes that I sounded just like him and even mentioned it to my family doctor years ago when I was in my sixties. He just laughed and said I would not be here now if I had CF. 

Then when I was 76 years old, I was having a lot of what my family doctor thought were unrelated symptoms that were becoming worse. He had ordered a lot of tests, and I was in his office going over the results with him. One test of my pancreas showed what he thought was a tumor. He then mentioned that my lungs showed a lot of scar tissue from many years of infection. 

Then I reminded him about my son dying from cystic fibrosis, and these tests were showing many of the signs of CF. He remembered seeing in the newspaper that a CF doctor for adults with CF had just come to the hospital since more patients were living into adulthood and being diagnosed in later life. He picked up the phone and called the new CF doctor, who agreed to see me right away. He sent me to take the sweat test and the gene study, and the rest is history. 

I was the lucky one to have such mild symptoms for so long and live a normal life for so many years. The severity of my problems has increased in recent years, but now that I am being treated for CF, I am doing well. I have been and continue to be treated at the Cystic Fibrosis Adult Clinic at Virginia Commonwealth University in my hometown.

Grady dreamed of the day when CF would be no more. Today, with newer, more effective drugs and a better understanding of genes, that day is so much nearer. He participated in a drug study at the NIH in the last year before his death, and that drug is now helping me. He always had faith that one day a cure would come. I wish he could be here to see it. That is the reason he kept striving to hold on and never give up. Every breath was a struggle. I would like to tell you more about this brave young man another day.

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