Overview
- The family first brought concerns about Faye’s mobility to Bristol Children’s Hospital in March 2019 and received a diagnosis of juvenile dermatomyositis later that year.
- Faye began treatment in January 2021 and received six cycles of chemotherapy over about five months that her mother says were unnecessary.
- Great Ormond Street Hospital reclassified Faye’s condition in August 2025 as de novo Emery‑Dreifuss muscular dystrophy type 2, a genetic disorder that causes progressive weakness and can cause life‑threatening heart problems.
- The family says repeated autoimmune tests were negative, a muscle biopsy indicated a congenital disorder that was overlooked, and disputes about which department would fund further testing delayed genetic screening.
- Christina Condon says the treatments caused major harm, including viral meningitis and rapid loss of mobility, and the case has prompted a formal complaint and scrutiny of NHS diagnostic processes that could lead to internal reviews.