I am committed to helping find a cure for cystic fibrosis and am raising funds to support the Cystic Fibrosis Foundation’s Annual Fund. Contributions to the Annual Fund provide important, unrestricted resources that help develop new treatments and pursue every opportunity for promising research that can lead to a cure. Please consider making a gift today. Your support will help make a difference for all those with CF and their families. Thank you!
My daughter Sophia was born June 9th, 2020. She came into the world kicking and screaming, and we know she would be a fighter. June 25th 2020 was the day we found out, a day we will never forget. Sophia was diagnosed with this chronic lung disorder, cystic fibrosis. We have struggled with so many emotions, guilt, anger, sadness. But we have been doing our best to channel our energy into doing everything we can to try to help find a cure for our girl.
Only 30,000 people in the US have CF. This is a rare disorder, that requires two sets of the CF gene mutation. Me and her dad just happened to both be carriers of the same gene mutation.
Since 2 months Sophia has been taking pills to digest her food, and will for her lifetime. She has been on breathing treatments since 4 months, and has recently started twice a day vest treatments.
In 1959, over half of those with CF didn’t live past 6 months. In 2008 the median survival age was 27.
Hearing these numbers is hard, but gives me hope that the with more research our daughter might just live a long healthy life, and overcome anything that comes in her path that tries to limit her.
Sophia is our would. She is so strong and smart.
To think there are parents out there who have watched their children pass at such a young age, is impossible to even understand. We want to do our part and help her and others just like her not just live, but thrive. We will not give up until CF stands for cure found.
Love , Sophias mom and dad