Unnecessary Chemotherapy After Misdiagnosis
A 12-year-old girl endured six rounds of unnecessary chemotherapy after being misdiagnosed by NHS doctors, her mother claims. Faye Condon was initially diagnosed with Juvenile Dermatomyositis (JDM) at age five, but later found to have a rare genetic condition called Emery-Dreifuss muscular dystrophy (EDMD).
Her mother, Christina Condon, said the treatment ruined her daughter's childhood. 'Doctors ruined my little girl's whole childhood,' Christina said. 'We put our lives on hold because we were always told she was going to get better.'
Misdiagnosis and Failed Treatments
Faye began experiencing muscle weakness, hip pain, frequent falls, and difficulty walking in 2019. Christina repeatedly asked doctors at Bristol Children's Hospital to explore alternative diagnoses, but they continued pursuing an autoimmune diagnosis. A muscle biopsy suggested a congenital muscle disorder, yet doctors pressed on with JDM treatment.
In January 2021, Faye started chemotherapy, undergoing six rounds over five months, along with regular injections. Christina described the side effects as 'horrific'. During this period, Faye became severely ill and contracted viral meningitis after a blood product transfusion.
Second Opinion Reveals Truth
After Faye's condition failed to improve, doctors at Derriford Hospital in Plymouth sought a second opinion and referred her to Great Ormond Street Hospital. There, at age 12, specialists immediately recognized signs of EDMD and confirmed it with a specific genetic blood test.
'All it took was a specific genetic blood test,' Christina said. 'They were so convinced it was JDM that they never looked for anything else.' There is currently no cure for EDMD, making the chemotherapy completely unnecessary.
Impact on Faye's Life
Faye now uses a wheelchair and is rapidly losing the use of her legs. She requires overnight ventilation and regular monitoring due to the condition's effect on her heart. Christina says an earlier diagnosis would have allowed the family to prepare for Faye's changing needs. 'If we'd had the right diagnosis years ago, we could have made memories while she was still able to walk and prepared our home for what was coming,' she said.
Christina has begun making a formal complaint against Bristol Children's Hospital. Metro has contacted the hospital for comment.
