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!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. I walk for them. Will you join me and support my fundraising goal?
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. We will not leave anyone behind.
Please support me!
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!