In January of 2014, God blessed us with the birth of our fourth child, Lucina Love. When she was twelve days old, our lives were rocked by the phone call from our pediatrician saying that the newborn screening done in the hospital at birth showed an elevated level of a protein indicating possible cystic fibrosis, and further DNA testing revealed two genetic mutations on the cystic fibrosis gene. Lucie had her first sweat test at St. Louis Children's Hospital on January 31st at just over two weeks old. After Lucie's diagnosis, our three older kids underwent testing as well. In August, we found out that our oldest son, Xavier, had the same genetic mutations as his baby sister.
Much of our lives revolve around Xavier and Lucie's daily care to stay healthy. They are both doing two thirty minute airway clearance (at first, they did manual CPT or chest physical therapy, but now use vibrating vests) sessions each day and up to four times when they have a cold, cough, or sickness. They also begin and end the days with multiple inhalers and nebulized treatments that help to open up their airways and thin and clear mucus from their lungs.
We are thankful for the excellent care they received at the CF Clinic at St. Louis Children's and in the last three and a half years at Texas Children's in Houston. Lucie has been admitted to the hospital for IV antibiotics five times in the last few years and Xavier has had a couple of two week admissions in two years. Lucie has battled a bacteria that she cultured that could potentially significantly lower her lung function and is very difficult to eradicate.
We are hopeful about the possibilities of care in their future. In 2014, the FDA approved a revolutionary drug, the first to treat CF at the cellular level, specifically for the mutations that our children have. Xavier took Kalydeco for five years now and Lucie for four years. Just over a year ago, Xavier switched to the new modulator Trikafta is even more effective and will help up to 90% of people with CF. We are so thankful for the work that the Cystic Fibrosis Foundation is doing to develop drugs like these and work toward a cure! This is our eighth year walking in the Great Strides walk. In the first seven years, Team eXceL raised over $36,000 for the CFF!
We are entrusting Xavier and Lucie's futures to God every day and praying that a cure for CF might be found soon!
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.