Meet Our Patient Ambassadors

Camden was diagnosed with cystic fibrosis (CF) two weeks after being born with meconium ileus, a CF-related bowel obstruction. He spent many days in the hospital throughout the first two years of his life with several more CF-related complications. Camden receives care from his team at Nemours Children's Health in Jacksonville quarterly when they check all vitals, including height, weight and oxygen levels, to ensure his growth is on track. In addition, they do a throat swab to check if he is growing any bacteria that needs to be treated and discuss his nutrition goals.

Camden also spends one hour a day at home doing chest therapy and nebulizers to keep his lungs clear, taking digestive enzymes with every meal and snack and taking many other medications to keep his sinuses and bowels clear to minimize potential hospital stays. While he may have a lot of maintenance care, CF doesn't stop him from living life. Camden attends public school, plays soccer, loves video games and spends lots of time playing with his friends and family.

At 9 months old, Charlie was diagnosed with eosinophilic esophagitis (EoE), a chronic allergic inflammatory disease of the esophagus, the muscular tube that carries food from the throat to the stomach. Shortly after Charlie’s EoE diagnosis, his family sought specialized care, making frequent trips out of state. He now receives all his care at Nemours Children’s Health in Florida. Nemours has become an important partner in Charlie's treatment, offering expertise and support in managing his disorder.

Charlie sees multiple pediatric specialists at Nemours including speech therapists, dietitians, nutritionists, orthopedists and endocrinologists. The youngest of three siblings, Charlie shares his condition with his older brother, with whom he has learned to thrive despite EoE. Charlie, 14, enjoys cooking and learning to make allergen-free substitutions to recipes he makes. He loves school, playing soccer with friends and running with his teammates on his cross-country and track teams.

Born with neuroblastoma and sickle cell disease (SCD), Fredrianna has been treated at Nemours Children’s Health, Jacksonville since birth and was in remission from her cancer by her first birthday. However, SCD complications have had Fredrianna in and out of the hospital throughout her young life. The excruciating sickle pain and acute chest syndrome meant she missed much of her childhood, including social experiences and time at school.

Nevertheless, by age 10, Fredrianna was a budding SCD educator and advocate, guided by her parents and her aunt, Selena Webster-Bass. Today, she is working on her associate degree. Fredrianna plans to continue her post-secondary education to become a clinical researcher for rare diseases and ultimately find a universal cure for SCD.