For those who don't know our story, our daughter Sydney was diagnosed with CF in 2023, at 11 days old. Her daily life looks the same as any other (almost) 2 year old - but she needs some extra TLC to keep her healthy. This includes chest PT twice a day with her percussion vest, and taking pancreatic enzymes with every meal/snack since her pancreas doesn't properly break down fat/protein. Sydney also takes a modulator, called Orkambi, that treats the underlying cause of CF. She has routine appts with the CF team at children's in Pittsburgh - 18 visits now to be exact!!

Next month, Sydney will be taken off Orkambi and started on Trikafta - a modulator approved for her type of CF. Trikafta prevents further progression of the disease. This is the MIRACLE DRUG because kids started on this medication may never even feel the effects of cystic fibrosis. This Med treats the underlying issue and isn't just a "bandaid" for symptoms. A true miracle for Sydney to live a long, healthy life..because of this she can be a grandma & even a great grandma one day. please pray that Syd experiences no side effects from this life-changing medication

We're so beyond thankful for Sydney's health and long life ahead. This wouldn't be possible without the medical advances that have been made, especially over the last 5 years. Most of the CF foundation research money comes from fundraisers/donations!!

Thank you for your constant support of Sydney!