Faye Condon, 12, endured six cycles of chemotherapy and five months of treatment after being misdiagnosed with an autoimmune disease. She was later found to have a form of muscular dystrophy for which there is no cure.
Misdiagnosis Led to Unnecessary Treatment
Faye was diagnosed with juvenile dermatomyositis (JDM) at age five after her mother, Christina, noticed she was not running or jumping like other children. Christina, 36, from Plymouth, was unconvinced and pushed for further tests. Despite negative results for JDM, doctors proceeded with chemotherapy beginning in January 2021.
Christina said: "She was about seven for her first round of chemo and was so sick, it was awful. We couldn't be near anybody and she became really poorly, it was horrific to watch. She then contracted viral meningitis as a side effect of a blood product a doctor gave her."
Seven Years of Incorrect Treatment
For seven years, Faye underwent home injections, muscle biopsies, and multiple hospital visits. Christina said: "We have spent her entire childhood in and out of hospital, we haven't been on holidays and we don't have a house or car that is wheelchair accessible as we were told she was going to get better."
Eventually, a referral to Great Ormond Street Hospital (GOSH) led to a correct diagnosis of de novo Emery-Dreifuss muscular dystrophy (EDMD) type 2, confirmed by a simple blood test. Christina said: "The specialist at GOSH took one look at her and named this type of muscular dystrophy. All it took to diagnose her was a blood test with specific genetic testing, but the doctors at BCH were so adamant that it was JDM they never sent for this test."
Impact on Family and Health
Faye is now losing the use of her legs and requires a ventilator at night. Christina added: "She is currently a ticking time bomb, her heart could stop at any minute. Had we known from five years old, we would have everything in place."
A 2023 study by the British Medical Journal estimated that misdiagnoses affect around one in 18 patients in primary and secondary care.
Formal Complaint and Trust Response
Christina is making a formal complaint against Bristol Children's Hospital (BCH). Professor Steve Hams, chief nursing and improvement officer at Bristol NHS Foundation Trust, said: "We are very sorry to hear of the concerns raised by Faye's family and our thoughts are with them. We are reaching out to her mother to listen to and understand her family's experience."
