A 12-year-old girl from Plymouth underwent six cycles of chemotherapy and numerous invasive treatments over several years after being misdiagnosed with juvenile dermatomyositis (JDM), an autoimmune disease, according to her mother. Faye Condon was initially diagnosed at Bristol Children’s Hospital in 2019 after her mother, Christina Condon, noticed her daughter was struggling to run, jump, and walk normally compared to other children.

Despite repeated treatments, including chemotherapy starting in January 2021, Faye's condition did not improve. Christina expressed concerns during this period, requesting additional testing as she felt the JDM diagnosis was incorrect. After years of persisting with hospital visits and treatments, the family sought a second opinion at Derriford Hospital in Plymouth. Medical professionals there agreed that the original diagnosis was likely wrong and referred Faye to Great Ormond Street Hospital (GOSH) in London.

In August 2025, specialists at GOSH diagnosed Faye with de novo Emery-Dreifuss muscular dystrophy type 2, a genetic condition for which there is currently no treatment. Christina stated that the correct diagnosis could have been made much earlier through specific genetic blood tests, which were not conducted at Bristol Children’s Hospital due to the initial confidence in a JDM diagnosis.

The misdiagnosis and resulting treatments had a profound impact on Faye and her family’s life. Christina said they spent much of Faye’s childhood in and out of hospital, missing out on holidays and adapting their home and lifestyle under the assumption that Faye would improve. She also mentioned that Faye has become wheelchair-bound and uses a ventilator at night, and that her health continues to decline, including concerns about her heart.

Christina criticized the initial medical care for not pursuing further investigations sooner and said the family faced both physical and emotional difficulties, including Faye being refused entry to a school due to changing needs related to her condition. She described the situation as having “ruined” her daughter’s childhood.

Professor Steve Hams, chief nursing and improvement officer at Bristol NHS Foundation Trust, expressed regret about the family’s experience and said the trust is reaching out to better understand their concerns. A formal complaint has been made by Christina Condon against Bristol Children’s Hospital, and the trust has committed to reviewing the case with care and compassion.