Oliver was diagnosed with Cystic Fibrosis when he was 20 weeks in utero, and his family has been fighting for his health ever since that day. Because Cystic Fibrosis causes irreversible lung damage, Oliver’s days are filled with medications and treatments to keep him as healthy as possible. His daily routine includes swallowing 30 pills, 3 nebulizer treatments, and 2 vest treatments. Unfortunately, even with all these treatments, Oliver was still in the hospital at least once a year for month-long IV medications due to lung infections. By the time he was 11 years old, he had a port placed in his chest for IV meds and a g-tube inserted in his stomach to help with weight gain.
Despite this – the medications, hospitalizations, and treatments – Oliver does his best to keep the most “normal” life a 13-year-old boy can have. He loves his friends, he loves his family and he LOVES sports. You can typically find Oliver on the basketball court, the tennis court, or the golf course, working tirelessly to improve his game.
Thanks to the Cystic Fibrosis Foundation, Oliver was given the chance to receive a new medication, Trikafta, when he was 12 years old. This medication reverses the primary defect of CF and has been life-changing for Oliver. He hasn’t been in the hospital since he started taking the drug, his weight increased significantly resulting in the removal of the g-tube, and his port has been removed due to the decreased need for iv medications. As a friend of the family, it has been amazing to see what this remarkable drug has done, and can only hope this good health continues for many years to come.
But this is still just a temporary fix, and there is a concern that the efficacy of Trikafta may wane. And Trikafta does not work with the mutations that cause CF in many other kids and adults. This is why we will not stop fighting for Oliver and others until CF stands for “Cure Found”.
I’d love for you to join me and John during the Fashion Breathes Life Gala on April 1, 2022. Those of you from Charlotte may know a little about this event, but FBL has been consistently raising more than $400,000 (in one night!) and attracts some of Charlotte’s most fashionable and charitable elite. I’ll be walking the runway as a 2022 “Supermodel” (gah!). I have lofty goals to meet, but with your help and support I know I can make it happen!
Thank you in advance for your support. You are helping to make a difference for people living with CF!
Best - Cheryl