18-year-old Chloe is preparing for her next chapter while continuing to manage a rare skeletal dysplasia with the support of her care team at Nemours Children’s Hospital, Delaware. Her medical journey began early, and has been shaped by expert care, community, and a team that understands her unique needs. During her mother, Cynthia’s, pregnancy, an ultrasound revealed that Chloe would be born with a form of dwarfism. These early signs prompted close monitoring and additional testing after birth. It wasn’t until she was about 1.5 years old that Chloe underwent genetic testing, confirming a spondyloepiphyseal dysplasia (SED) diagnosis. SEDs are disorders that involve both the spine and the ends of long bones. Patients with SED often experience musculoskeletal problems with the neck, spine, lower limbs, feet, and joints. As her family navigated the early stages of her diagnosis, they connected with Little People of America (LPA). While attending an LPA regional […]
