Walk with our team to Cure Cystic Fibrosis
Team EXceL
Team eXceL
Join our team and help add tomorrows!
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.
Xavier and Lucie work hard every day to stay healthy! Their treatments include two thirty minute airway clearance sessions each day and up to four times a day 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.
We are so grateful for all the advancements in care that have drastically changed the outlook for their future!. In 2019, the FDA approved a revolutionary drug that treats CF at the cellular level for up to 90% of those with CF. Xavier began taking this new modulator called Trikafta immediately after FDA approval and Lucie began Trikafta three years 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 twelfth year walking in the Great Strides walk. In the first eleven years, Team eXceL raised approximately $60,000 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!
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.
Xavier and Lucie work hard every day to stay healthy! Their treatments include two thirty minute airway clearance sessions each day and up to four times a day 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.
We are so grateful for all the advancements in care that have drastically changed the outlook for their future!. In 2019, the FDA approved a revolutionary drug that treats CF at the cellular level for up to 90% of those with CF. Xavier began taking this new modulator called Trikafta immediately after FDA approval and Lucie began Trikafta three years 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 twelfth year walking in the Great Strides walk. In the first eleven years, Team eXceL raised approximately $60,000 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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