Our Great Strides Story
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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 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 Clinics at St. Louis Children's, Texas Children's in Houston, and Riley Children's in Indianapolis. Lucie has been admitted to the hospital for IV antibiotics five times 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 three 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 year and a half 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 TENTH year walking in the Great Strides walk. In the first nine years, Team eXceL raised over $44,000 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!
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