A British girl spent seven years of her childhood undergoing unnecessary chemotherapy and repeated hospitalisation after being wrongly diagnosed with a rare auto-immune disease, only to later discover she had an incurable genetic muscle condition. Faye Condon, now 12, received a corrected diagnosis of emery-dreifuss muscular dystrophy (EDMD) type 2 in August 2025 — years after doctors at Bristol Children's Hospital told her family she had Juvenile Dermatomyositis (JDM).

The Wrong Diagnosis and Its Devastating Consequences

Faye was first assessed at Bristol Children's Hospital at the age of five, where clinicians diagnosed her with Juvenile Dermatomyositis (JDM), a rare auto-immune disease in which the immune system attacks the body's blood vessels. Based on that diagnosis, doctors began administering chemotherapy in 2021 — a recognised treatment pathway for JDM.

Faye's mother, Christina Condon, described watching her daughter suffer through six rounds of the gruelling treatment as "horrific." She said Faye was around seven years old when she received her first round, and the side effects were severe. As a further complication, Faye contracted viral meningitis as a result of a blood product administered during treatment, leaving her confined to a darkened room to recover.

"She was so sick, it was awful. We couldn't be near anybody and she became really poorly," Ms Condon said. "Those doctors ruined my little girl's whole childhood."

A Mother's Instincts Were Repeatedly Dismissed

Ms Condon said she had suspected muscular dystrophy long before the correct diagnosis was made. Faye struggled to keep up physically with children her own age, could not walk 180 metres to school without difficulty, and would fall without warning. Her mother resorted to recording videos and taking photographs to document her daughter's condition after feeling her concerns were not being taken seriously.

"I first took her for hip pain and an inability to bear weight," Ms Condon explained. "The doctors couldn't see what I could see as a parent."

Despite repeatedly raising the possibility of muscular dystrophy, Ms Condon said the family was "categorically told" the condition was not the cause of Faye's symptoms. She also alleges that internal disagreements over departmental funding at the hospital contributed to delays in further testing, with staff openly discussing which department would bear the financial cost of additional investigations.

"The doctor was very flippant about it — they just threw medicine at her but nothing would make a difference," she said.

A Second Opinion Finally Brings Answers

After years of unanswered questions, Ms Condon sought a second opinion at Derriford Hospital, which resulted in a referral to Great Ormond Street Hospital (GOSH) in London. It was there that Faye was finally diagnosed with EDMD type 2 — a rare inherited disorder affecting the muscles, for which there is currently no cure.

The correct diagnosis arrived too late to change the course of Faye's early life. The family had been repeatedly told she would recover, leading them to delay adjustments such as making their home wheelchair-accessible or planning accessible travel. Faye is now losing the use of her legs and was reportedly refused entry to a school because her needs had changed too significantly.

Her condition also poses life-threatening risks. Ms Condon described her daughter as "a ticking time bomb," explaining that Faye requires a ventilator at night and faces the ongoing risk of sudden cardiac arrest.

"We put our lives on hold because we were always told she was going to get better," Ms Condon said. "If we had the correct diagnosis seven years ago, we could have gone on holiday and had more fun with her before she was wheelchair-bound."

Family's Anguish Over Lost Years

The Condon family says the misdiagnosis has robbed Faye of a normal childhood. Years of hospital visits, the trauma of unnecessary chemotherapy, and the uncertainty of a shifting medical picture have taken a profound toll. Ms Condon says had the muscular dystrophy been identified when Faye was first able to walk, the family could have made very different choices about how to spend that time together.

Concerns about the vulnerability of young children within institutional care settings continue to draw public attention, as cases like Faye's highlight the critical importance of thorough investigation and parental advocacy when a child's health is at stake.