Air Sofia

Our team is driven by a dream that one day, our sweet girl, Sofia, along with every person with cystic fibrosis will have the chance to live a long, healthy life. You can help us reach that goal!

Our Great Strides Story

 We are participating in the Great Strides walk to support Sofia! 

Sofia came into this world ready to leave her mark on it! From the moment she was born, she had the spirit of a fighter! She defied so many of the odds stacked against her. Our brave girl went thru being emergently delivered prematurely of a mother who was barely clinging to both her own and her daughters lives; being diagnosed with meconium ileus, 2 hospital transfers, surgeries, MANY tests and more in her first days of life. She spent her first 3 months being so loved and well cared for while inpatient at Riley Hospital for Children. 

On 11/25/21- Thanksgiving Day- we received a phone call informing us the results of Sofia’s sweat test from the day before had come back indicating that she did in fact have Cystic Fibrosis. With her diagnosis, we were finally able to begin treatments that would lead to her 12/20 discharge that allowed her to be home with her family in time for her first Christmas!

Now, Sofia is the CUTEST little 2 year old. If her big, bright blue eyes and sweet smile aren’t enough to win your heart, her outgoing personality surely will! She is cheerful, sweet, and fun, but also a little sassy! 

Sofia’s CF does take up a lot time each day. On a normal, healthy day, she takes at least 12 creon pills, 1 nebulized medication, 1-2 nasal sprays, 1 liquid medication, and thanks to continued research- she was able to start Trikafta shortly after her 2nd birthday. (She takes this twice a day). She has a g-tube through which she receives a 10 hour overnight feed comprised of formula mixed at a higher calorie recipe, pediasure1.5, duocal powder for even more extra calories, salt, and vitamin d supplements. She uses a special cartridge with her setup that allows her to absorb this nutrition. She does airway clearance therapy twice a day for 30 min each which can be quite the daunting task. 

Outside of all these things, Sofia is like any other 2 year old girl.  You can find her playing with her big brothers, dancing and singing, playing with her dolls, or watching Frozen on repeat and singing along to all the songs. She loves princesses, snuggling, being outside and resting EVERY boundary! Our hope is that one day she will be able to follow her heart wherever it will lead her without the daily battle with CF holding her back! 

You can support Sofia!

By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease for Sofia and the 40,000 Americans living with CF. Please consider joining us and help make medical history!

Join our team to help make a difference in the lives of all people living with CF. To become a member, click the "Join this  team" button. From there, you can donate and start fundraising.  

As a member of our team, you are joining a growing community of people committed to finding a cure for cystic fibrosis. Together, we can make CF stand for Cure Found.