‘My daughter is a ticking time bomb after doctors misdiagnosed her for years’

Faye Condon went through six rounds of needless chemotherapy after doctors misdiagnosed her

A young girl underwent six cycles of chemotherapy unnecessarily after she was misdiagnosed with an autoimmune disease. Faye Condon, 12, was first diagnosed with Juvenile Dermatomyositis (JDM) aged five after her mum, Christina Condon, noticed that she was not running and jumping as well as other children her age.

Christina, 36, was not convinced by the diagnosis and pushed doctors to test for other diseases. After seven years, six rounds of chemotherapy, home injections, and a muscle biopsy, Faye was finally referred to Great Ormond Street Hospital (GOSH) where she was diagnosed with de novo Emery-Dreifuss muscular dystrophy (EDMD) type 2.

There is no treatment for ED muscular dystrophy. Christina, from Plymouth, 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.

“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.”

In March 2019, Christina decided to take Faye to the hospital because she knew something wasn’t right with her development. She was referred to Bristol Children’s Hospital (BCH), where doctors ran initial tests.

She 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, I had to take videos and pictures to prove it. It was subtle but obvious to me as her mum. 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, but as parents we shouldn’t be hearing that.

“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. In November 2019, we got the JDM diagnosis.”

As a result of the JDM diagnosis, 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.”

A 2023 study by the British Medical Journal (BMJ) estimated that misdiagnoses affect around one in 18 patients in primary and secondary care. But Christina then begged doctors at her local clinic at Derriford Hospital for a second opinon.

One of the first doctors that saw Faye at her local clinic at Derriford Hospital, Plymouth, agreed with Christina that the JDM diagnosis was not correct and pushed to get her referred to GOSH. 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.”

The doctor at Derriford Hospital did genetic blood tests and referred her to GOSH, where Faye finally received the correct diagnosis. Christina told Talk to the Press: “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. I feel so let down by everybody.”

There is no treatment for muscular dystrophy, so it is mostly about keeping Faye as comfortable and pain-free as possible. Christina said: “She is losing the use of her legs very quickly, she was refused entry into a school because her needs changed too much.

“Our house is not made for a wheelchair user so our house is unsafe. 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 and wouldn’t be in such a desperate situation now.

“Every appointment we go to is more bad news and Faye is not coping with the new diagnosis, she has lost the ability to be independent. If I was Faye I would have given up by now, but she depends on me.”

Christina is in the process of making a formal complaint against BCH. 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.”