Our son Cullen was diagnosed with Cystic Fibrosis when he was just a few weeks old. Although he was nursing constantly, he kept losing weight because his body wasn't able to absorb any nutrients from the milk due to severe pancreatic insufficiency.
After many hours of patient education, we learned how to break up the tiny capsules of pancreatic enzymes needed to digest his food and administer them with every feeding. He continues to take 7 capsules with every single meal and snack. The nurse educators taught us how to do manual chest physiotherapy to help loosen the thick mucus building up in his lungs. Now that he is big enough, he has a special vest he wears daily to help clear his lungs and make it easier to breathe. We were taught how to administer his breathing treatments and the importance of keeping all of the equipment sterile. At three years old, he is now starting to do his breathing treatments independently, as it has become a regular part of his day.
The coupling of receiving Cullen's diagnosis at the start of a global pandemic was difficult on our entire family, as we were very restrictive on who we allowed to be around him. While we are still being careful and limiting unnecessary risk, we also understand his need for social interaction and try to incorporate this in ways that are less risky for him.
A new update we are excited to share- we are expecting an announcement from the FDA this year that Trikafta will be approved for Cullen’s age group!! This medication will drastically slow the progression of his disease and allow him to have a much better quality of life. It is through the support of the Cystic Fibrosis Foundation and generous donors like you that this was made possible.
Thank you so much to our friends, family, and coworkers for supporting us on this journey. In addition to your generous donations to the CFF, we hope to see many of you at the Great Strides Event here in Charleston!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!Join our team and help us get one step closer to a cure for cystic fibrosis – a rare, genetic, life-shortening disease that makes it difficult to breathe.
With supporters like you by our side, the Cystic Fibrosis Foundation continues to lead the way in the fight against CF, fueling extraordinary medical and scientific progress. The life expectancy of someone born with CF has doubled in the last 30 years. Despite this progress, many people with CF do not benefit from existing therapies either because their disease is too advanced or because their specific genetic mutations will not respond. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease.
We walk in Great Strides for them.
Will you join us?
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF.
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let’s make CF stand for Cure Found!
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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.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
FOR YOUR SAFETY AND THE SAFETY OF OTHERS: