Girl, 12, had childhood 'ruined' after mistakenly being given six rounds of chemo following misdiagnosis
A 12-year-old girl went through six cycles of chemotherapy without any need for it after being misdiagnosed.
Plymouth girl Faye Condon was diagnosed with Juvenile Dermatomyositis (JDM) at Bristol Children's Hospital when she was five after her mum Christina noticed she wasn't running around as well as other children her age.
“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," Christina said.
However, the mum wasn't sure about the JDM diagnosis and wanted doctors to conduct further tests, saying they'd been 'very flippant about it' and 'just threw medicine' at Faye with it not making a difference.
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The 36-year-old said the family 'put our lives on hold because we were always told she was going to get better', and in October 2019 they were 'categorically told it was not muscular dystrophy'.
However, Christina thinks the doctor 'was looking for her to fit into a rheumatology disease' and suspects 'he was tainted before he had even seen Faye'.
She said: “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."
It was November 2019 when her daughter was diagnosed with JDM, a diagnosis which led to Faye's first unnecessary chemotherapy treatment in 2021.
Starting at the age of seven, the girl went through six rounds of chemotherapy, with Christina saying it was 'awful' and made her daughter 'really poorly'.
It wasn't until Christina spoke with doctors at her local Derriford Hospital, Plymouth, to provide a second opinion and they agreed that whatever Faye had it wasn't JDM.
They referred her to Great Ormond Street Hospital where she was finally diagnosed with de novo Emery-Dreifuss muscular dystrophy (EDMD) type 2.
It's a condition for which there is no treatment, and Christina wishes her daughter had received the correct diagnosis sooner because the family could have spent more time with her before she became confined to a wheelchair.
Christina 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."
The mum mentioned that Faye had contracted viral meningitis as a side effect of a blood product a doctor had given her, and says her daughter 'wouldn't have had to have any of this if they diagnosed her properly the first time'.
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."
She said that a specialist at Great Ormond Street Hospital 'took one look at her and named this type of muscular dystrophy', adding that all it took was a blood test which doctors at Bristol Children's Hospital hadn't sent for.
The mum said the doctors who misdiagnosed her daughter 'ruined my little girl's whole childhood', saying that the focus is now on making sure Faye is as comfortable and free of pain as possible.
“She is losing the use of her legs very quickly, she was refused entry into a school because her needs changed too much," Christina said.
“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.
The mum said if they'd got the right diagnosis sooner they would have prepared things by now, and she's making a formal complaint against Bristol Children's Hospital.
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."
Joe Harker