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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
Every year, about 1,000 children are born with cystic fibrosis, an inherited chronic disease that affects the lungs and digestive system of about 30,000 people in the U.S., according to the Cystic Fibrosis Foundation. In the 1950s, few children with cystic fibrosis lived to attend elementary school, the CF Foundation says, but new advances in research and medical treatments have enhanced and extended life for children and adults.
Lucy has a less common form of cystic fibrosis that's known as the G551D genetic mutation. When she was born, little did we know that this mutation would prove to be the first genetic mutation that cystic fibrosis researchers were able to correct.
That breakthrough is a drug known as Kalydeco, recently approved by the FDA for children older than 6. Lucy, who is 4½, started Kalydeco off label in March 2013 -- one of the first children younger than 6 in the United States to take it.
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.
The treatments can be challenging, they are time consuming and not what she would like to spend her time doing. But she is already able to explain why she does them and how they help to clear out and open up her airways, she understands more than I ever dreamed possible for a child her age.
One of my favorite people to talk with is a man in his 50s who lives in Seattle and has cystic fibrosis. He tells of how treatments have changed over the years, and how much more doctors and researchers know today. Lucy is blessed to have a vibrating vest that loosens sticky thick mucus from her lungs instead of having to have us "clap" on her back and chest.
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.
It is amazing to see them all work together. Many times those appointments are several hours long, and we love visits from the child life specialists who know just what a 4 year old might enjoy to pass the time. Recently they brought her in tasty snacks, a coloring project and bubbles to blow.We are also incredibly thankful for the support of our family. From my brother who runs marathons all over the country in Lucy's honor to each one of our friends and relatives who help us by walking, climbing, biking, golfing, attending auctions, dinners and galas to support the CF Foundation, we are surrounded by people who have been touched by Lucy's life.
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.
Great Strides walk June 2 in OlympiaGreat Strides, the Cystic Fibrosis Foundation’s fundraising walk, is June 2 at Heritage Park in Olympia. Check in is at 1 p.m. and the walk starts at 2 p.m., with a barbecue sponsored by Eagan's Drive-In at the finish line. To support Team Lucy, visit www.cff.org/great_strides/christywebster. To sign up for the walk, visit www.cff.org/great_strides. Questions? Contact Christy Webster at firstname.lastname@example.org.
Cystic Fibrosis Clinic
The Cystic Fibrosis Clinic at Mary Bridge Children’s Hospital & Health Center offers children with cystic fibrosis convenient access to a range of special services. The multidisciplinary team includes board-certified pediatric pulmonologists and gastroenterologists, respiratory therapist, pediatric nurses, CF care coordinator, dietitians, social workers and psychologists and a child life specialist. The Mary Bridge Cystic Fibrosis Clinic is an accredited care center of the Cystic Fibrosis Foundation.
Posted on May 29, 2013 in