Every test for the autoimmune disease was negative, but they kept treating for it anyway.
A child's earliest years are shaped by the diagnoses adults assign to her body, and when those diagnoses are wrong, the consequences compound quietly until they become irreversible. Faye Condon, a twelve-year-old girl in England, spent seven years receiving chemotherapy for an autoimmune disease she never had, while the progressive muscular dystrophy she actually carries went unnamed and unaddressed. Her mother's persistent questioning eventually led to a correct diagnosis at Great Ormond Street Hospital — but not before the unnecessary treatment had taken her mobility, her childhood, and years that cannot be returned. The case asks something older than medicine: what do we owe a child when the institutions entrusted with her care mistake certainty for knowledge?
- A five-year-old girl was given a confident diagnosis that turned out to be entirely wrong, and the medical system's investment in that error made it nearly impossible to correct from within.
- Six rounds of chemotherapy — begun when Faye was seven — caused viral meningitis, severe illness, and accelerating physical decline, all in service of treating a disease she did not have.
- Every test ordered to confirm the autoimmune diagnosis came back negative, and a muscle biopsy pointing toward a congenital condition was overlooked rather than pursued.
- A mother's documentation, persistence, and refusal to accept the original verdict ultimately forced a referral to a different hospital, where a specialist identified the correct condition in a single consultation.
- Faye now uses a wheelchair, sleeps on a ventilator, and faces a progressive, incurable condition — while her family, told for years she would recover, made no preparations for the life they are now living.
- Questions about departmental cost disputes and diagnostic tunnel vision at Bristol Children's Hospital remain unanswered, even as the Trust issues expressions of sorrow.
Faye Condon was five years old when her mother noticed she wasn't moving the way other children did. At Bristol Children's Hospital in November 2019, doctors delivered a diagnosis of Juvenile Dermatomyositis, a rare autoimmune disease, and the family reorganized their lives around the promise of recovery.
Seven years later, Faye is twelve and uses a wheelchair. She has never had JDM. The chemotherapy she received — six rounds beginning at age seven — was unnecessary. The condition she actually carries, de novo Emery-Dreifuss muscular dystrophy type 2, is progressive and incurable, requires no chemotherapy, and affects her heart in ways that could prove fatal. She uses a ventilator at night.
Christina, her mother, was skeptical from the beginning. She filmed her daughter's falls, documented her struggles, and asked doctors directly whether muscular dystrophy might be the cause. She was told categorically in October 2019 that it was not. When chemotherapy began in January 2021, Faye became severely ill and contracted viral meningitis as a side effect. Still, every test for the autoimmune disease returned negative. A muscle biopsy suggested a congenital condition — but that result was set aside. The genetic blood test that would have revealed the truth was never ordered.
Christina eventually sought a second opinion at Derriford Hospital, where a physician agreed the JDM diagnosis was wrong and pushed for a referral to Great Ormond Street Hospital in London. In August 2024, a specialist there identified Faye's condition immediately. A single genetic test confirmed it. The diagnosis could have been made when Faye was five and still walking.
Christina has described the cost of those years with painful precision — no holidays, no wheelchair-accessible home, no preparations made, because they were told their daughter would recover. She also noted that staff at Bristol openly discussed which department would bear the cost of additional testing, raising questions about whether financial considerations shaped the diagnostic process.
Bristol NHS Foundation Trust expressed sorrow and promised to listen. For Faye, the listening came too late. Her condition will only worsen, and the ordinary childhood she might have had — the sleepovers, the travel, the unremarkable joys of growing up — has already passed.
Faye Condon was five years old when her mother first noticed something was wrong. The girl wasn't running and jumping the way other children her age did. Christina took her to Bristol Children's Hospital, where doctors ran tests and in November 2019 delivered a diagnosis: Juvenile Dermatomyositis, a rare autoimmune disease. The family was told Faye would recover with treatment. They reorganized their entire lives around that promise.
Seven years later, Faye is twelve and confined to a wheelchair. She has never had JDM. The chemotherapy she endured—six brutal rounds beginning when she was seven—was unnecessary. The condition she actually has, de novo Emery-Dreifuss muscular dystrophy type 2, requires no chemotherapy at all. It is progressive, incurable, and degenerative. Her heart could stop at any moment. She uses a ventilator at night and cannot sleep over at friends' houses the way other girls her age do.
Christina, Faye's mother, knew something was wrong from the beginning. She watched her daughter struggle to walk two hundred yards to school. She saw her fall randomly, without warning. She documented it all—videos, photographs—and brought the evidence to doctors. But the initial diagnosis seemed settled. When Christina asked whether it might be muscular dystrophy, she was told categorically in October 2019 that it was not. The doctor, she recalls, seemed convinced before he had even properly examined Faye, as though he was already looking for her to fit into a rheumatology disease and nothing else would do.
Chemotherapy began in January 2021. Faye was seven. The treatment was, by her mother's account, horrific to watch. The girl became severely ill. She contracted viral meningitis as a side effect of a blood product a doctor administered, and was forced to spend days in a dark room. Every test for the autoimmune disease came back negative. Not a single one pointed toward JDM. A muscle biopsy actually indicated a congenital muscle disease—not an autoimmune condition—but that result was overlooked. The doctors at Bristol Children's Hospital, Christina says, were so certain of their diagnosis that they never pursued the genetic blood test that would have revealed the truth.
Frustrated and desperate, Christina turned to Derriford Hospital, her local clinic, and asked for a second opinion. A doctor there agreed with her immediately: the JDM diagnosis was wrong. That physician pushed to have Faye referred to Great Ormond Street Hospital in London. In August 2024, nearly six years after the original misdiagnosis, a specialist at GOSH took one look at Faye and named her condition. A single genetic blood test confirmed it. The diagnosis should have been made when Faye was five years old and still able to walk.
Christina describes the cost of those lost years with a clarity that cuts through the medical language. "We have spent her entire childhood in and out of hospital," she said. "We haven't been on holidays and we don't have a house or car that is wheelchair accessible because we were told she was going to get better." Had they known the truth from the start, they could have made different choices. They could have traveled. They could have prepared. Instead, they were told to wait for recovery that would never come, while their daughter endured treatment she did not need.
The case also raises questions about how decisions get made inside hospitals. Christina observed that staff members were vocal about a financial dispute over which department would pay for testing. Tests cost money. No one wanted to take responsibility for ordering more of them. The doctor at Bristol Children's Hospital seemed, in her view, to have decided what Faye's disease was before fully investigating whether other possibilities existed. A specialist at a different hospital saw her once and knew immediately what was wrong.
Bristol NHS Foundation Trust issued a statement expressing sorrow for the family's experience and promising to listen and understand what happened. For Faye and her mother, understanding came too late. The girl is losing the use of her legs rapidly. She was refused entry into a school because her needs changed too much. Every appointment brings more bad news. The childhood that might have been—the holidays, the sleepovers, the ordinary joys of growing up—is gone. What remains is a progressive condition that will only worsen, and the knowledge that it could have been different.
Citas Notables
Those doctors ruined my little girl's whole childhood. Had we known from five years old and they had diagnosed her correctly, we would have everything in place.— Christina, Faye's mother
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.— Christina, describing the diagnostic evidence that was ignored
La Conversación del Hearth Otra perspectiva de la historia
How did a misdiagnosis like this survive for so long without being caught?
Because everyone involved seemed to have already decided what they were looking for. The doctor at Bristol Children's Hospital was, by the mother's account, looking for a rheumatology disease before he'd even properly examined the girl. When tests came back negative for that disease—all of them—instead of reconsidering, they just kept treating for it anyway.
But the muscle biopsy showed something different, didn't it?
Yes. It pointed to a congenital muscle disease, not an autoimmune condition. But that result was overlooked. It didn't fit the narrative they'd already constructed, so it was set aside.
What changed when she got to Great Ormond Street?
A fresh set of eyes. A doctor who wasn't invested in the original diagnosis. He looked at her and ordered a genetic blood test—the one test that would have solved this years earlier. It took one visit to do what six years at another hospital couldn't.
The mother mentioned financial disputes between departments. Do you think money influenced the decision not to test?
She observed staff being vocal about which department would pay for testing. Whether that directly caused the delay, I can't say. But it's telling that the barrier to diagnosis seemed to be cost, not medical uncertainty. The tests existed. They just weren't ordered.
What's the hardest part of this for the family now?
The lost time. The girl was still walking when she was five. Now she's in a wheelchair and losing mobility rapidly. The mother keeps saying they could have done things differently—traveled, prepared, made memories—if they'd known the truth. Instead they were told to wait for a recovery that was never going to happen.