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 two 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.
It has been a steep learning curve for the whole family, but we are all finally settling into a rhythm here in our new home in Charleston. Cullen is loving the beach and his new role as a big brother! Our sweet little Grace was born last summer and we are beyond thrilled that our family is now complete.
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 as it will be Cullen's first time participating as a walker!
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!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
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 help minimize the risk of COVID-19, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.