Our daughter's journey with cystic fibrosis, and why we have hope
Six days after our daughter was born, we received a phone call that changed our life.
Our baby Lucy had tested positive for cystic fibrosis.
Two hours later, we were face to face with Dr. David Ricker in the Cystic Fibrosis Clinic at Mary Bridge Children’s Hospital & Health Center in Tacoma, Wash.
Dr. Ricker assessed Lucy, then sat down for a long talk with my husband Randy and me. As Dr. Ricker took the time to help us begin to understand cystic fibrosis and how it would impact Lucy's life, we felt as if we were the only thing he had going on that day.
After many questions were answered and many tears cried, Dr. Ricker asked if it would be OK for him to pray with us for Lucy and our family.
We held our beautiful baby girl and bowed our heads.
That was the single most powerful moment I have ever had in a medical setting.
Dr. Ricker’s prayer gave us courage and direction -- it placed within us a feeling of God being in control.
As we left Mary Bridge that day, Randy and I looked at each other and said, "We can do this."
The evolution of treatments
Kalydeco helps Lucy's cells to work the right way. The medication helps loosen mucus that clogs up the lungs and digestive system. It lessens the chance of bacteria building up and improves lung function.
Since starting Kalydeco, Lucy has been able to stop two of her medicines and change one to just as needed instead of scheduled daily.
Her daily routine still includes more than an hour of chest therapy and breathing treatments, rigorous attention to hand hygiene, and about 26 pills throughout the day. We hope to be able to decrease some more as she stays on Kalydeco for a longer period.
Lucy is seen at least every two months at the Cystic Fibrosis Clinic within Mary Bridge Children's Health Center. At these visits, she sees a team of health care professionals including pediatric physicians who specialize in pulmonology, allergy/immunology and gastroenterology, as well as a dietitian, social worker, nurse and a respiratory therapist.
As Lucy grows, we pray that she continues to realize the importance of staying healthy, doing treatments and taking her medicine. She is still able to be a fun loving kid, she enjoys playing soccer, ballet, swimming, taking snow ski lessons and learning how to water ski. Most people would never know Lucy has cystic fibrosis, but it's something we never ever forget.
Lucy is a beautiful gift from God, and we were meant to give our all to help her live the healthiest, happiest life possible.
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