I believe there will be a cure for cystic fibrosis.
Before my son Ricky was born in 1995, I had heard of cystic fibrosis, or CF. I had read Frank DeFord’s book Alex, the Life of a Child, about his daughter who died of CF. I certainly never thought I’d have to deal with it in my own life.
Then along came Ricky, needing breathing assistance after being born via an emergency cesarean, in distress and rushed into surgery within hours of his birth. My life came crashing down. My husband and I were in our early twenties, inexperienced and hopeful for the future. Now we had this tiny premature baby to watch over. This was not what we had planned.
Within a couple of weeks, Ricky was diagnosed with cystic fibrosis. I demanded that someone explain to me what this meant. The internet was also in its infancy, and the books at the library were decades old. Finally I cornered Ricky’s gastroenterologist in the neonatal intensive care unit, and she explained it all to me: the genetics, the life expectancy, the probable outcome.
Cystic fibrosis is a genetic disease. When two carriers have a baby together, there is a 25% chance that their child with have CF, and will suffer from lung infections and digestive problems, among other things, for the rest of its life. When Ricky was born, the life expectancy was 29. His entire life he would be expected to fight to breathe and survive.
This young mother was stunned. I alternately cried and scrounged for information. I learned how to care for Ricky, from the nurses who cared for him in the NICU. And when we were finally allowed to bring him home, I threw myself into caring for him and advocating for him.
And finally, I attended a support group with other parents of children with CF, and adults with CF. There they told me, “Keep your son healthy. Take care of his lungs. Then, when the cure comes, he will still be healthy enough to benefit from it.”
This opened up new horizons for me. A cure. Now I had something to think about – keeping his lungs healthy. The more I attended the meetings and conferences, the more I learned about ways that scientists were trying to cure this disease: gene therapy, inhaled medications, improved digestive enzymes, airway clearance techniques. Over time, my hope and determination grew.
Today, Ricky is 11. He is wonderful about doing his treatments and takes 25 medications. His disease is moderate, and he’s hospitalized about once a year. He has two healthy younger siblings. I fight to keep him healthy. I keep those lungs clear with treatments and airway clearance. So most of all, Ricky is my labor of love.
When that day comes, when the cure is here – Ricky’s lungs will be healthy enough. He will benefit from the cure when it comes, and it will – because I believe, there will be a cure for cystic fibrosis.
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