Sylvie’s Story
Sylvie was born on March 31st, 2022. Before she was born we chose to forego any prenatal testing, we would love this child no matter what. When she was born we had every reason to believe she was healthy, but on April 7th (just one week after her birth) we were sat down at the pediatrician and told that Sylvie had Cystic Fibrosis.
As we struggled with this news and all the life changes that came along with it, we clung firmly to the cross of our Savior Jesus Christ.
Sylvie immediately began taking pancreatic enzymes, vitamin drops, and salt everyday.
When she was 6 weeks old one of her nurses called and informed us that due to very normal levels in her stool, Sylvie would no longer need to take pancreatic enzymes or vitamin drops, hallelujah!
We had further testing done on her blood and found that she has a very unusual from of CF. She is one of nine known cases with the particular gene mutations she has and because of this there are essentially no answers for her future at this point.
Jim and I have Christ as our firm foundation. He has led us through the most difficult year we’ve ever endured with grace for each morning, and we cannot stop glorifying His mighty name for all He has done and all He will do for our precious daughter.
Sylvie is one of our greatest blessings in life. She is full of light and joy, and Cystic Fibrosis does not identify who she is.
Please consider donating to her team for the Great Strides event. Our goal is to find a cure for all people walking with this insidious disease, and we want to give all the glory to God for the amazing people who are helping make this dream a reality.
The Great Strides Story
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. They are moms, dads, sisters, brothers, daughters, sons, and friends who face the sobering prospect of a shortened lifespan. I walk for them.
Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.
You can support me!
By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.
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Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
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