Sloan’s Journey with Trevor’s Disease

The story of Sloan

On June 7, 2023 Sloan attended her last Level 3 artistic team gymnastics practice. Although she was a trooper throughout practice, near the end of practice she was experiencing a lot of right ankle pain that we thought could have been a sprain or fracture. The next day, we brought her to the pediatrician, and we were referred to a pediatric orthopedist. After examination he was baffled with his suspicious findings on her x-ray showing an extra bone in her right foot near her ankle joint. He said he had never seen an anatomy of a foot quite like this in his 32 years of practice, so he began consulting other orthopedic surgeons. After ordering a CT scan, the following Tuesday we learned that she was diagnosed with Trevor’s disease, also known as Dysplasia epiphysealis hemimelica (DEH). This news took us by surprise, and we started digesting as much knowledge as possible and we began searching for the best care for this rare bone disease. After visiting a local orthopedic surgeon in San Antonio, TX, Scottish Rite hospital in Dallas, TX and Paley Ortho + Spine in West Palm Beach, FL we decided to have Paley institute perform the surgeries and long term care to help Sloan with care for this disease. After months of PT she is getting stronger and faster and is hopeful to return to gymnastics in the near future! We are so thankful for all the support from family, friends, doctors, therapists and organizations such as this one who show great care for people with rare dieases.