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 two 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 two years and Xavier has had a couple of two week admissions in the last year. 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 has been taking Kalydeco for five years now and Lucie for three years. Just two months ago, Xavier switched to the new modulator Trikafta which hopefully will be 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 seventh year walking in the Great Strides walk. In the first six years, Team eXceL (formerly Team Lucie Love before we knew of Xavier's diagnosis) raised over $33,000 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!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.