13-year-old dancer battles rare bone disease with hope, resilience, and determination

Milton Keynes, UK – October 2025 — Thirteen-year-old dancer, Lillie, who has been dedicated to dance since the age of three, is now fighting her toughest battle yet — against a rare childhood bone disease known as Perthes disease.

Lillie’s journey began in May 2023, when she complained of groin pain that rapidly worsened until she was unable to walk. Initial scans suggested a possible hip fracture, but after further tests, doctors at Milton Keynes University Hospital delivered the devastating diagnosis: Perthes disease, a rare condition that affects just 1 in 9,000 children, where blood supply to the femoral head is cut off, causing the bone to weaken and collapse.

Despite months of hospital visits, physiotherapy, and the use of crutches, Lillie’s condition continued to deteriorate. “We felt lost and hopeless,” said Lillie’s mum. “Every appointment ended with the same message: wait and see. But I couldn’t just accept that my daughter’s only future option was a hip replacement.”

Determined to find answers, the family researched tirelessly and discovered a specialist in Sheffield with experience treating Perthes disease. In July 2025, after extensive scans and consultations, Lillie was placed on the surgical list.

On 18th September 2025, Lillie underwent a five-hour operation at Sheffield Children’s Hospital. Surgeons performed a core decompression procedure, inserting an external fixator to stabilise her hip and femur while her bone heals. The device will remain in place for 16 weeks, followed by months of intensive rehabilitation and further surgery to reshape her hip.

Throughout her ordeal, Lillie has shown remarkable resilience. Even when unable to dance, she attended every class and competition, supporting her teammates from the sidelines. “Dance is her passion,” her mum said. “She has never stopped believing that one day she will return to the dance floor.”

Now, Lillie and her family want to use their story to raise awareness of Perthes disease and highlight the need for more research into this life-changing condition. Once fully recovered, Lillie also hopes to fundraise for charities including STEPS, Perthes Kids Foundation, and Sheffield Children’s Hospital.

“Reading another dancer’s story gave us the hope we needed,” her mum added. “If sharing Lillie’s journey can help even one more family find answers sooner, it will all be worth it.”