Faye Condon, now 12, was wrongly diagnosed with the rare autoimmune disease Juvenile Dermatomyositis (JDM) at age five and underwent six cycles of chemotherapy before the NHS discovered the error seven years later. She has since been diagnosed with de novo Emery-Dreifuss muscular dystrophy (EDMD) type 2, a condition with no treatment.
Mother's concerns dismissed for years
Christina Condon, from Plymouth, Devon, repeatedly pushed doctors at Bristol Children's Hospital (BCH) to test for other diseases, but her concerns were dismissed. '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,' she said. 'If we had the correct diagnosis seven years ago when Faye was able to walk, we could have gone on holiday and had more fun with her before she was wheelchair bound. We put our lives on hold because we were always told she was going to get better.'
Initial symptoms and misdiagnosis
Christina first took Faye to doctors after noticing she was not running and jumping as well as other children her age. She was referred to BCH, where initial tests in November 2019 led to the JDM diagnosis. 'I first took her for hip pain and inability to bear weight, and we knew something was wrong but the doctors couldn't see what I could see as a parent. She couldn't walk 200 yards to school, she would randomly fall, I had to take videos and pictures to prove it,' Christina said. 'The doctor was very flippant about it, they just threw medicine at her but nothing would make a difference. In October 2019 we were categorically told it was not muscular dystrophy, but I'm sure that the doctor was looking for her to fit into a rheumatology disease.'
Unnecessary chemotherapy and complications
Faye underwent her first round of chemotherapy in January 2021 at age seven. '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,' Christina said. 'She then contracted viral meningitis as a side effect of a blood product a doctor gave her and she was forced to stay in a dark room.' Every test for JDM was negative, and a muscle biopsy pointed to a congenital muscle disease, but that was overlooked. 'There is no treatment for muscular dystrophy so she wouldn't have had to have any of this if they diagnosed her properly the first time,' Christina added.
Second opinion leads to correct diagnosis
After years of asking BCH for more tests, Christina begged doctors at Derriford Hospital for a second opinion. One of the first doctors there agreed that the JDM diagnosis was incorrect and pushed for a referral to Great Ormond Street Hospital (GOSH) in London. 'Without the support of doctors at Derriford Hospital, we would never have got the correct diagnosis. They have been amazing from day one, they listened to and believed us as parents and really pushed for someone to listen,' Christina said. GOSH diagnosed Faye with de novo Emery-Dreifuss muscular dystrophy type 2 in August 2025. '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,' Christina said.
Impact on Faye's health and family
Faye is now losing the use of her legs quickly, was refused entry into a school because her needs changed too much, and is on a ventilator at night. 'She is currently a ticking time bomb, her heart could stop at any minute and she cannot have a sleepover like other girls in her class. Had we known from five years old, and they had diagnosed her correctly, we would have everything in place… every appointment we go to is more bad news,' Christina said.
Hospital response
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. We want to approach this with care and compassion and will take the time needed to fully understand what has happened.'
