I am being honored by the Cystic Fibrosis Foundation at a special event recognizing outstanding professionals in my community. In accepting this distinction, I have committed to raise money to help the Foundation realize its mission of curing cystic fibrosis (CF) and providing all people with CF the opportunity to lead long, fulfilling lives.

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On September 26th, 2023, my husband and I welcomed a baby girl, Georgia, into the world! For standard practice these days, she gets her newborn screening test while in the hospital. A week after she is born, the pediatrician calls us and tells us her test came back showing she carries two Cystic Fibrosis gene mutations. We didn't understand what this really meant and they didn't have much else to tell us. But we would do further testing and see more specialists. I cried and cried and cried, but held out hope for what we would learn. We had to go to Children’s hospital for further testing. So, on October 6th, we went for the first sweat test. We joked about them having a baby get on a stationary bike to sweat, but it's from a chemical reaction measuring the chloride in the sweat. And at only a week and a half old, Georgia didn’t produce enough sweat to give a definite answer. So we’d have to do it again in a few weeks. In the meantime though, we met with a genetic counselor, social worker, nurses and a pulmonologist. They did a cheek swab and took a stool sample for further testing and that week confirmed she had CF and we would begin medication. 

It wasn’t fair, this precious innocent baby, being diagnosed with this life long, life altering disease that has no cure. We cried for her future, we cried for the difficult road ahead, we cried because she didn’t deserve this burden. 

On October 10th, Georgia had her first taste of applesauce and in that applesauce was her first dose of Creon. She began with one capsule before every feeding, which parents know is a lot in those first weeks. Day and night I would have to get medicine ready with a crying baby because she just wanted to eat but she couldn’t until she had her medicine. As she continues to get bigger, her medicine intake continues to increase. Today she is taking 6 pills in applesauce before every feeding, which is 30 pills a day. Her care and medications will continue to change as she gets older too, but we’ll handle it all as it comes. 

We see her team at Children’s in Minneapolis once a month. We couldn’t be more grateful for this team, from helping with insurance issues (the worst), letters for daycare and work, check-ins, bringing awareness to the disease at community events, medication management, dietary guidance, and so much more. 

Nobody knows what the future holds, disease or no disease, but we know what the terrible possibilities could be with Georgia having CF. We’ll take it day by day, soak up the sunshine, dance in the rain, laugh, cry and love. I will fight for you, Georgia, for the rest of my days. 

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Please help me meet my fundraising goal by making a donation. By supporting my fundraising efforts, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.

To learn more about CF and the CF Foundation, visit www.cff.org. Together, we can make a difference in the lives of those with cystic fibrosis. Thank you for supporting the mission of the CF Foundation!