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Kinley's Story:
At just 1.5 weeks old, we got the call that Kinley's newborn Screen came back abnormal due to high IRT levels. That following Monday after her confirmatory sweet test, as soon as the door opened and we saw the doctors suited up (in full PPE - before covid normalized it), we received the news that our baby girl had Cystic Fibrosis.
It's hard to believe that Kinley has been fighting this disease for over 3 years now. Since her diagnosis, we've embraced our 'new normal' which consists of quarterly Clinic visits, multiple throat cultures, chest physical therapy, antibiotics, and so much more. A typical day for her looks like: vest therapy in the morning with a dose of Kalydeco, another antibiotic, nasal spray and rinses, followed by another round of vest therapy and Kalydeco in the evening. Each chest therapy session takes 30 minutes to complete.
To the outside person, you'd never know she has a progressive disease attacking, not just her lungs, but throughout her body. Most of her issues are actually related to her sinuses, she is constantly fighting infections which usually land her on 14 days of antibiotics again and again. This can lead to antibiotic resistance, which is a truly scary concern for most CFers. Kinley recently had a CT scan on her sinuses and unfortunately received the news that most of her sinus cavities are jam packed with thick mucus. She had sinus surgery on Valentine's Day (Feb 14, 2023). We don't quite know what this surgery will do for her, but we know it was a step to getting her back to baseline.
But, with that being said, there is so much hope! It's amazing (beyond words) to see what has happened in the CF community since Kinley has been diagnosed. Trikafta was approved by the FDA for not only for 12 and up, but for six and up! This is truly a miracle drug and has changed/extended the lives of so many CFers.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.