At three years old, Hali was diagnosed with Marfan syndrome. This is a genetic disorder of the connective tissue that can affect the heart, eyes, skeleton and lungs. For Hali, this condition has caused her to endure two open heart surgeries to correct her heart’s valves, and two skeletal reconstruction surgeries on her feet that subsequently failed. She also has scoliosis, which is a curvature of the spine. For her scoliosis, Hali has suffered through two surgically implanted steel rods to correct her fused spine, though this causes her to have extremely limited mobility. Her bones are also exceptionally fragile and Hali must go to the hospital every six months for calcium treatments. In addition, Hali has severe dexterity problems and is blind in one eye.
Once in Florida, Hali and her family were overcome with all of the sights and sounds of the tourist town. “It was really something,” said Hali’s father. “We wanted to see everything,” and it sure seemed like they did! Hali and her family visited Disney’s Hollywood Studios and Epcot Center as well as SeaWorld!
Though she loved going “around the world” at Epcot, riding all of the simulators and enjoying the interactive shows, Hali’s favorite theme park was SeaWorld, where she had a real blast!