A mother has claimed that doctors ruined her 12-year-old daughter’s ‘whole childhood’ after she underwent months of unnecessary chemotherapy.
Faye Condon, who is now aged 12, was diagnosed with Juvenile Dermatomyositis (JDM) at the age of five after developing muscle weakness and struggling to walk or run.
Her mother, Christina Condon, however, said that she never believed the diagnosis was correct and repeatedly asked doctors at Bristol Children’s Hospital to investigate different routes.
Despite her concerns, Faye underwent six rounds of chemotherapy over five months, as well as regular injections, which Christina says left her feeling seriously unwell.
After Faye’s condition failed to improve, doctors at Derriford Hospital in Plymouth agreed to seek a second opinion and referred her to specialists at Great Ormond Street Hospital.
There, aged 12, she was diagnosed with a rare genetic condition called novo Emery-Dreifuss muscular dystrophy (EDMD), which causes progressive muscle weakness, joint stiffness and potentially life-threatening heart problems.
Discussing the chemotherapy that Faye received, as there is currently no cure for EDMD, Christina said it was completely ‘unnecessary’.
‘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.
‘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.’
Now, Christina says she has begun the process of making a formal complaint against Bristol Children’s Hospital after she first sought medical help for Faye in 2019.
After doctors tested her daughter for experiencing hip pain, frequent falls and difficulty walking, Christina claims that every test came back negative.
A muscle biopsy then suggested that she could have a congenital muscle disorder, but doctors reportedly continued to pursue an autoimmune diagnosis.
In January 2021 Fate began chemotherapy, with Christina describing the side effects as ‘horrific’.
During this period, she said that Faye became severely ill and later contracted viral meningitis following a blood product transfusion.
After specialists at Derriford Hospital then pushed for further genetic testing, Faye was referred to Great Ormond Street where signs of EDMD were immediately recognised.
‘All it took was a specific genetic blood test,’ she said.
‘They were so convinced it was JDM that they never looked for anything else.’
Today, Faye now uses a wheelchair and is rapidly losing the use of her legs. She also requires overnight ventilation and regular monitoring because of the condition’s effect on her heart.
Christina says that an earlier diagnosis would have allowed the family to better prepare for Faye’s changing needs.
Metro has contacted Bristol Children’s Hospital for comment.