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.
Our children are blessed to have a combination of mutations that is on the milder side of the CF spectrum. Still, much of our lives revolve around their 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 year and a half at Texas Children's in Houston. Lucie has been admitted to the hospital for IV antibiotics four times in the last year and a half and Xavier had a two week admission for the first time recently. Lucie is currently fighting 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 almost four years now and Lucie for almost two years. 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 sixth year walking in the Great Strides walk. In the first five years, Team eXceL (formerly Team Lucie Love before we knew of Xavier's diagnosis) raised $27,500 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.
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.