Cy was born on 6/5/18. We learned that he has cystic fibrosis when he was 6 days old from the newborn screen. It was an emotional experience for Jerry and me. We went through periods of denial and depression. We fluctuate between feeling overwhelmingly fearful and incredibly hopeful. Our heads were spinning after meeting with a gowned and gloved team of a doctor, nurse, respiratory therapist, dietician, and social worker at Nemours. We were handed a 3-inch binder describing CF, the complications, and treatments. We learned how to administer enzymes on applesauce before every feeding and how to do breathing treatments and chest percussions.
Cy will be 4 years old in June and is doing well. He swallows over 25 pills, 2 nebulizers, and does 1-2 hours of vest therapy every day. He also takes Orkambi twice a day, one of the first CFTR modulators. He is a true CF warrior and amazes us everyday!
- At the age of 2, he learned how to swallow 6 enzyme pills in one gulp.
- He holds his own nebulizer and knows how to start and pause his vest machine during his breathing treatments.
- He learned how to take deep breaths from his inhaler.
- He knows how to wrap his finger and all the right buttons to push to check his oxygen with the respiratory therapist.
- He bravely gets his blood drawn for labs every 3 months and does a "big cough" for his throat culture
- He is a self-taught ninja-in-training and makes the best fighting sound effects
- He will try just about any food because he knows he needs extra fat and protein
- He is the most loving big brother to his baby sister
- Even though it's often a struggle getting a 3 year old to cooperate for 1 hour breathing treatments twice a day, we are so proud of him!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting groundbreaking research and medical progress towards a cure. Please help me reach my fundraising goal!
Help us say CYonara to CF!
Did you know? "65 roses" is a symbol for cystic fibrosis. A young boy overheard his mother talking on the phone about cystic fibrosis. He said "mom, I know what you are raising money for... 65 roses." Ironically, Cy's birthdate is 6/5.
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