Faye Condon: Girl wrongly given six rounds gruelling chemotherapy after UK health system misdiagnosed her

A British family says their daughter wrongly endured six rounds of chemotherapy after being misdiagnosed with a rare auto-immune disease, only to discover seven years later she was actually living with a form of muscular dystrophy.

Faye Condon, now 12, was diagnosed with Juvenile Dermatomyositis (JDM), a rare auto-immune disease where the immune system attacks blood vessels, at the age of five after being assessed at Bristol Children’s Hospital.

Believing Faye had JDM, doctors began chemotherapy in 2021 as a common treatment option for the auto-immune disease.

Faye’s mother, Christina Condon, said the side effects her daughter suffered during the gruelling treatment were severe.

“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 told the The Mirror.

“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.”

Ms Condon first noticed something wasn’t right when Faye struggled to keep up with other kids her age and developed problems walking and began questioning muscular dystrophy.

“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 180 metres to school, she would randomly fall, I had to take videos and pictures to prove it,” Ms Condon explained.

Despite her concerns, Ms Condon said she was repeatedly assured her daughter did not have muscular dystrophy and requests for further investigations were rejected.

“The doctor was very flippant about it, they just threw medicine at her but nothing would make a difference,” she added.

“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.”

Following years of concerns, Ms Condon sought a second opinion at her local clinic at Derriford Hospital, where they were given a referral to Great Ormond Street Hospital (GOSH) in London.

Faye then received a new diagnosis in August 2025 of emery-dreifuss muscular dystrophy (EDMD) type 2, a rare genetic condition that has no cure.

The misdiagnosis left the family devastated, with Ms Condon claiming years of treatment, hospital visits and uncertainty could have been avoided.

“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.

“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.d to a congenital muscle disease, not an autoimmune disease, but that was overlooked.”

Although the new diagnosis brought some relief, the inherited disorder has greatly altered Faye’s quality of life.

“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,” Ms Condon said.

“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.”

Ms Condon said despite years of pain the family were grateful to doctors who correctly diagnosed Faye.

“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.”

In a statement cited by the Mirror, a spokesperson from Bristol National Hospital said the medical facility was in contact with the Condon family.

“We are very sorry to hear of the concerns raised by Faye’s family and our thoughts are with them,” Chief Nursing and Improvement Officer Professor Steve Hams at Bristol NHS Foundation Trust said.

“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.”

According to Muscular Dystrophy Queensland, emery-dreifuss muscular dystrophy is a genetic, degenerative disorder that mainly affects muscles in the upper arms, shoulders and calves.

The disorder can also lead to serious complications that need ongoing medical care as it impacts the heart.

Symptoms usually appear in early childhood and may include:

• Joint contractures limiting movement in the neck, ankles and elbows
• Muscle wasting and weakness, especially in the upper arms, shoulders and calf muscles
• Stiffness or tightness in the elbows, neck and heels