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 for four years at Texas Children's in Houston and have recently moved to Riley Children's in Indianapolis. Lucie has been admitted to the hospital for IV antibiotics five times in the last few years and Xavier has had a couple of lengthy admissions as well. Lucie has battled a bacteria in the past 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 two years ago, Xavier switched to the new modulator Trikafta that is even more effective and will help up to 90% of people with CF. Lucie was able to start Trikafta a few months ago as well. 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 ninth year walking in the Great Strides walk. In the first eight years, Team eXceL raised over $40,000 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!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.