Clarabelle and Davey were both diagnosed with Cystic Fibrosis at birth through the newborn screen. They take countless amounts of medicine and treatments for their disease on a daily basis. In addition to daily medicines, we periodically have lengthy hospital stays. 2018 was a tough year for our family as both children were admitted for their Cystic Fibrosis. They were cared for by the best nurses and doctors at Children’s Healthcare of Atlanta. Praise the Lord, they are well now!
While my children look and act normal, this is a silent disease. There are hours of treatments at home for not just one, but two kids. There is monitoring of poops and weight gain and cleaning nebulizers.
In October Clarabelle began taking Orkambi which is a medicine that is in the family to a cure. Davey will begin taking this in April. Y’all they are sooo close to a cure! I believe they will find one in their lifetime! We sell shirts and walk each year to give back to the Foundation who is funded by private donations and royalties from medicines. Our donations allow them to continue developing lifesaving medicines and treatments to fight this disease. We have always received overwhelming support from our friends and family! The number of shirt orders has continued to grow since we started walking for a cure in 2014! I don’t expect anything different for this year.
From day one my verse for the kids has been Psalms 150:6 - Let everything that has breath, Praise the Lord! Praise the Lord. God made man different from any other piece of creation because He breathed LIFE into his nostrils. What will you do with this precious breath? Our faith is stronger than ever. The Lord has taught us sooo much through these kids’ lives. We will not waiver, nor lose heart. We will run this race for the joy set before us!
See the link where you can purchase your shirt for this years walk. If you have any questions about the kids, their disease, or the reason we walk, feel free to ask! I want to spread more awareness about this disease. Thank you in advance for your support!
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to 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 not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, 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. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.