Faye Condon, 12, wrongly underwent six rounds of chemotherapy after she was misdiagnosed with an autoimmune disease.
A young girl saw her ‘childhood ruined’ after she was wrongly given chemotherapy following a misdiagnosis. Faye Condon, 12, was told that she had the rare autoimmune disease Juvenile Dermatomyositis (JDM) seven years ago only to find out she never had the condition.
Mum Christina was not convinced by the diagnosis and pushed doctors to test for other diseases. She has been proven right as Faye has now been diagnosed with a form of muscular dystrophy for which there is no treatment.
Faye was first taken to hospital aged five when Christina noticed that she was not running and jumping as well as other children her age. She was referred to the Bristol Children’s Hospital (BCH) where doctors ran initial tests and in November 2019 the family were told Faye had JDM.
Speaking to our sister title the Mirror, 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.
“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.
“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.
“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.”
Chemotherapy started for Faye, then aged seven, in January 2021 and the six rounds of the gruelling procedure she underwent took its toll on her. 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.”
Frustrated with constantly asking BCH for other tests to find out what condition Faye really had, Christina turned to doctors at Derriford Hospital, her local clinic, and begged 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.”
In August last year, nearly six years after her JDM diagnosis, doctors at GOSH told Faye she had de novo Emery-Dreifuss muscular dystrophy (EDMD) type 2 – a rare, progressive disorder which has 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.”
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