Cy was born on 6/5/18. After telling everyone how perfect he was, we learned that he actually 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. One thing that I remember clearly from our first meeting with the CF clinic team was that although CF life expectancy used to be around 10 years old, it is now closer to 50 thanks to improved therapy. Between 2016 and 2017, the average life expectancy went up 9 years! We hope our beautiful, sweet baby Cy has a cure soon!
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.