DAYTON GREAT STRIDES MAY 7 2023 & FUNDRAISING FOR A CURE
When Caroline was two weeks old she was diagnosed with a rare genetic disease called Cystic Fibrosis (CF). CF effects nearly every organ in Caroline's body, most notably the lungs, pancreas and digestive system.
There is no cure for CF and CF is progressive, meaning over time the symptoms of CF cause irreversible damage to the body.
Although, we have come so far in the treatment of CF symptoms and preventative care, the life expectancy of someone born with CF in 2018 (the year Caroline was born) is still, on average, 38.
CAROLINE'S STORY
Caroline was diagnosed with CF through the newborn screen test at two weeks old. Just 24 hours after her CF diagnosis, she was in the hospital for Xrays, a sweat teast and labwork.
Caroline's labwork confirmed she also had Pancreatic Insufficiency (PI) due to CF complications. PI is not uncommon in CF; it means that Caroline's pancreas does not function well enough on its own to allow her to grow and maintain health without supplemental pancreatic enzyme therapy (PERT).
Because of CF related PI, she has had to take medication with every meal or snack since she was 14 days old.
In addition to taking medication every time she eats, Caroline also does one hour of breathing treatments as well as Chest Physical Therapy every single day. When she is sick or has a cold, we increase her treatments to 2 hours daily.
The Vest or Manual percussions we do on Caroline daily help loosen the mucus within her lungs which can lead to chronic, rare and difficult to treat lung infections.
There are many other things we do every single day to address the ways CF is progressing in Caroline's body. Thankfully, we can currently say she is doing really well!!
HOPE
The hope we have for Caroline to live not just a long life but also one with health, is rooted in the work the Cystic Fibrosis Foundation is doing.
They are the driving force behind the life-saving research that has moved the needle of life expectancy thus far from just 5 years old to 38 years old.
The CF Foundation is the reason we have enzymes to give Caroline every time she eats, genetic modulator treatments she takes twice a day, specialized inhaled antibiotics she takes with chronic infections, and the CF Care Team at Cinci Children's helping us care for Caroline every step on her journey.
They are so much more than just a foundation, they are the key to giving Caroline a much needed cure for CF.
On May 7, 2023, we will celebrate all of the work the CF Foundation has done for Caroline and others living with CF at the Dayton Great Strides Walk.
Everyone and anyone is welcome who wants to celebrate with us. We will walk one mile in honor of those with CF, share in meals and yummy food and enjoy tons of fun stuff for kids to do!
If you have any questions do not hesitate to reach out to me!
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
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