Kyle and I don’t talk much about cystic fibrosis (CF) and how it affects our kids and family. We try to live as normal lives as possible. We’re not much for pity parties. We have early mornings and late nights spending 2+ hours each day doing the kids treatments, medications, and managing all things CF. It could be a part time job keeping up with their doctor appointments, tests, prescriptions, how much they have eaten or pooped - along with figuring out how we cover everything financially (changing insurance is a feat ).
We do all this because Charlie and Georgia have a genetic mutation that causes thick, sticky mucous to build up in their lungs and gut. This can cause serious lung infections and makes it difficult for them to absorb fat and nutrition from their food. Georgia was hospitalized her first 100 days of life for a bowel blockage and Charlie has struggled to gain weight for the past couple years.
People diagnosed with CF used to not live to see 30 years old. But now CFers are living longer because of the discovery of new medications funded by the Cystic Fibrosis Foundation.
Charlie and Georgia are not yet eligible for the new life saving drug Trikafta, but they will be soon. There are also new treatments in the works like gene therapies that could essentially cure them. Donating to the Cystic Fibrosis Foundation can help get new treatments to people with CF and help them live more normal lives.
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