The NHS misdiagnosed a youngster and administered six cycles of chemotherapy.
Faye Condon, 12, was wrongly diagnosed with the rare autoimmune disease Juvenile Dermatomyositis (JDM) at age five in a mistake mum Christina says “ruined her whole childhood”.
Christina pressed medical professionals at Bristol Children’s Hospital (BCH) to check for additional illnesses since she was not persuaded by the diagnosis. After seven years, Faye was found to have a kind of muscular dystrophy for which there is no known cure.
Christina, from Plymouth, Devon, 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.”
The mum added: “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.”
Christina, 36, 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 doctors conducted initial tests, and in November 2019 the family were told Faye had JDM.
Christina said: “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, and I had to take videos and pictures to prove it.
“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; it was almost like he was tainted before he had even seen Faye.
“Everyone could see there was something wrong, but no one wanted to take responsibility for her and do more tests, as tests cost money. The staff at the hospital were very vocal about a financial fight about which department would pay for testing.”
Faye underwent her first round of chemotherapy 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, and she was forced to stay in a dark room.
“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. Every test for the autoimmune disease was negative; not a single test they did pointed towards JDM. She even had a muscle biopsy, which pointed to a congenital muscle disease, not an autoimmune disease, but that was overlooked.”
After years of asking BCH for more tests, Christina begged doctors at her local clinic at Derriford Hospital for a second opinion. One of the first doctors who saw Faye at the hospital in Plymouth agreed with Christina that the JDM diagnosis was not correct and pushed to get her referred to Great Ormond Street Hospital (GOSH) in London.
Christina said: “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.”
GOSH diagnosed Faye with de novo Emery-Dreifuss muscular dystrophy (EDMD) type 2 in August 2025, for which there is no treatment.
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.
“Those doctors ruined my little girl’s whole childhood. She is losing the use of her legs very quickly; she was refused entry into a school because her needs changed too much.
“She is currently a ticking time bomb; her heart could stop at any minute, and she is on a ventilator at night, so 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.”
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.”
A child put through six rounds of chemo she never needed, years wasted, mobility lost, and a family gaslit at every turn. That isn’t a “mistake.” That’s a systemic failure with a human cost.
Negligence has a price, and when the system fails, someone should be accountable.
Faye is now wheelchair‑bound. Her family lost years they could have spent making memories while she was still mobile, and they were constantly told she would “get better,” so they delayed adapting their home and life.
This is one of the most severe recent NHS misdiagnosis cases involving a child — not only because of the unnecessary chemotherapy, but because the correct diagnosis was actively resisted despite clear evidence pointing away from the autoimmune disease.
I hope they file a lawsuit against the hospital, because in cases like this, the legal threshold for negligence would very likely be met.
Every doctor owes every patient a legal duty, and they acted in a way no responsible clinician would, and her parents can bring a claim now, because the harm is ongoing and documented.
THE MONTHLY MOSQUITO 