Girl, 12, put through six rounds of chemotherapy for wrong disease after alleged diagnosis blunder

Faye's condition has no cure and she is losing mobility at a fast pace

A 12-year-old girl spent seven years being treated for the wrong condition, undergoing six rounds of chemotherapy for an autoimmune disease she never actually had before being correctly diagnosed with an untreatable type of muscular dystrophy.

Faye Condon was eventually taken to Great Ormond Street Hospital, where specialists identified a spontaneous form of Emery-Dreifuss muscular dystrophy type 2 - a diagnosis her mother, Christina, is adamant could have been picked up years earlier with a single genetic blood test.

But because doctors at Bristol Children’s Hospital were convinced Faye had Juvenile Dermatomyositis, the test was never requested.

Christina brought her daughter into the hospital in March 2019 after noticing she was struggling to run, jump and walk the way other children her age could.

Her concerns were repeatedly waved aside, however, despite mounting evidence in the form of footage of Faye falling and struggling to manage a 200-yard walk to school.

She claims that every test carried out for JDM came back negative, and that a muscle biopsy pointed to a congenital muscle disorder rather than an autoimmune one, yet the evidence was still disregarded.

Faye was still diagnosed with JDM that November and began chemotherapy at around age seven.

Christina describes her daughter becoming severely unwell during the treatments, even going on to develop viral meningitis at one point.

It was only after the mother pushed for a second opinion that a doctor in Plymouth arranged a referral to Great Ormond Street, where Faye was correctly diagnosed.

There is currently no treatment for Faye’s condition and her mobility is rapidly declining.

She was recently turned away from a school unable to accommodate her needs and has to use a ventilator overnight; her family is racing to depart their home for wheelchair access.

Christina says earlier diagnosis would have given them time to prepare, which they now don’t have.

The Chief Nursing and Improvement Officer at Bristol NHS Foundation Trust said: “We are very sorry to hear 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.

“We want to approach this with care and compassion and will take the time needed to fully understand what has happened.”