At our 20-week ultrasound appointment, we learned our daughter, Alexandra, had a Congenital Heart Defect (CHD) that would require surgery to repair around age one. As saddened as we were to hear this news, nothing could have prepared us for the call we got a few weeks later. The genetic testing also revealed our daughter had Cystic Fibrosis.
Cystic Fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. CF is an inherited disease, meaning she got one copy of a gene from each of her parents. Knowing little about the disease and being unaware it ran in our families – feelings of shock and fear overwhelmed us.
Luckily, those feelings quickly transitioned to hope days later as we visited our now amazing CF Care Center, SSM Health Cardinal Glennon Children’s Hospital. We learned about the advances in the disease thanks to the continuous work of the Cystic Fibrosis Foundation. We learned Alex’s outlook was very positive and that at 4-months old she would be eligible for one of the latest, ground-breaking drugs (Kalydeco) that has changed the lives of many living with the disease. Most importantly, we learned Alex was going to live a very full, long, and normal life.
On New Year’s Day 2020, Alex came into the world and changed our lives for the better. We heard that people with CF are some of the toughest, most optimistic people – and Alex more than fits that mold. She does her treatments, doctor’s visits, testing, and medication with a smile from ear to ear. She is a happy 3-year-old who never stops talking, loves her big brother, dancing, princesses, all things pink; and wants to be a police girl when she grows up. Our family has settled into our daily routines that prioritize her medications and vest airway clearance treatments – which have turned into ‘bonus’ family time every morning and night.
While the CF cause is very near and dear to our hearts, it goes beyond that. We have learned a lot about the advances and dedicated work of the CF Community. We strongly believe that the Cystic Fibrosis Foundation is one of the most efficient organizations of its kind and that scientists are making discoveries that will someday lead to a one-time cure.
In May of 2023, Alex was able to start Trikafta, A drug that treats the underlying cause of CF. We are hopeful this drug will create a better quality of life for her, and prevent her disease from progressing. It’s not a cure, but more than a HUGE dose of hope. This box came from hundreds of millions of dollars of fundraising, hundreds of thousands of volunteer hours, too many fundraisers to count, and tens of billions of dollars poured into drug development. We are so thankful for the CFF and for individuals and organizations that support events like Birdies for Breathing to make moments like this possible.
With supporters like you, the Cystic Fibrosis Foundation has led the way in the fight against CF and fueled extraordinary medical and scientific progress. Working alongside the CF community, the CF Foundation has helped advance the development of more than a dozen CF treatments and added decades of life for those with CF.
The fact that drug development funded by the CFF has led to longer and healthier lives for those with CF is amazing, but what makes the foundation so special is that those achievements aren’t good enough – they won’t stop their mission until a cure for Cystic Fibrosis is found.
Thanks to the work of the Cystic Fibrosis Foundation, we believe that for our daughter and the other 30,000 Americans living with Cystic Fibrosis, a day free from the burden of this disease is on the horizon.
Thank you for your support!
Ziegler Family & Friends
Email: email@example.com | Phone: 314-607-7202 | Instagram:@Birdies4Breathing