Cecelia Jayne was 2 weeks old when she was diagnosed with Cystic Fibrosis. The day after her diagnosis, George and I were sitting with her soon to be CF team, delving into all that is CF. Enzymes, Mutations, CF history, Nutrition, Family Roles, Therapies, Nebulizers, etc... Tears were shed. A lot of them. How could this happen? George and I didn't know we were carriers. We had 3 healthy, thriving boys, and now, our beautiful new daughter had an incurable disease. To the parents of a newly diagnosed baby, Cystic Fibrosis is ridiculously scary and overwhelming.
We were told that she was born at the right time, that there were so many medications and therapies coming up the pipeline. That she would be able to take a medicine come 2 years old that will make a huge impact in her life. We were told to save for college, to treat her and raise her as we were treating and raising our boys, not to put her in a bubble.
Cecelia is going to be 6 in June and she is thriving! She is strong and brave. She is a leader and loves to learn (and has been lucky to have the best of the best teachers and nurses at school) She has wonderful friends and family who continue to support her and our family each day!! Her team of doctors and nurses at CCMC have been instrumental in allowing Cece to get and stay as healthy as she has been these past few years! Since Cecelia was about 20 months, she has been on Kalydeco which we are so very thankful for! We do her respiratory treatments and therapies each and every day because we want to keep her as healthy as possible for as long as possible! Please consider joining our fight in finding a cure for our sweet Cecelia and all of the other CF Warriors across the globe!
George and I want so much for our little girl. What we want more than anything though, is a CURE. We are dedicated to do what we can to help this happen. We are NOT scientists, doctors, or researchers. We can raise money though.
Please consider helping Cecelia fight this fight. Donate today! Even the smallest amount can help pur baby have more tomorrows!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. I walk for them and hope you will support me in my efforts.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.