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!
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.