What to Know
A family in England is speaking up after their daughter lost years of her life to treatment for an illness she didn’t have. Faye Condon spent years being treated for Juvenile Dermatomyositis (JDM) after being diagnosed at the age of five. The treatments included multiple rounds of chemotherapy, home injections, and a muscle biopsy.
Still, when her mom Christina expressed concern, doctors failed to test the girl for other possible illnesses. After fighting for additional tests and going to another hospital, the family found out that Faye has an untreatable form of muscular dystrophy. Now, she’s lodging a complaint against the hospital for the misdiagnosis.
The mom knew something was off with her little girl.
In March 2019, Christina took then five-year-old Faye to the hospital because she knew something wasn’t right about the way she was developing. She was referred to Bristol Children’s Hospital, where doctors began running tests.
“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,” U.K. newspaper The Telegraph reported. “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.”
Doctors began testing the girl for an autoimmune disease, but all the tests were negative, the mom said. She added that “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.”
The family received the JDM diagnosis in November 2019.
Faye Condon underwent years of unnecessary treatment.
She was about seven years old when she underwent her first round of chemotherapy in January 2021, Christina told SWNS. The treatment made her “so sick,” her mom said, calling the experience “awful.”
“We couldn’t be near anybody and she became really poorly, it was horrific to watch,” Christina said. “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.”
As her daughter faced a series of new health problems based on the treatment for JDM, she went to her local clinic at Derriford Hospital to beg for a second opinion.
One of the first doctors who saw Faye agreed that the JDM diagnosis was wrong, and pushed for a referral to Great Ormond Street Hospital. Doctors there “took one look at her” and diagnosed her with de novo Emery-Dreifuss muscular dystrophy type 2. It was confirmed by a blood test.
Her mom is placing the blame on the doctors at Bristol Children’s Hospital.
“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,” she said.
She told SNWS that when she took Faye to the hospital initially, the doctor was very “flippant” about her concerns, and “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,” she explained.
Despite “everyone” being able to see something was wrong, “no one wanted to take responsibility” and run more tests because “tests cost money,” the mom said.
“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.”
Even now, she says that they “try to avoid” returning to BCH because they “don’t trust the doctor there.”
“Those doctors ruined my little girl’s whole childhood. I feel so let down by everybody.”
Professor Steve Hams, Chief Nursing and Improvement Officer at Bristol NHS Foundation Trust, made a statement shared by People about Christina’s claims.
“We are very sorry to hear of the concerns raised by Faye’s family and our thoughts are with them,” the statement read, adding that they “are reaching out to her mother to listen to and understand her family’s experience.” He continued, saying “We want to approach this with care and compassion and will take the time needed to fully understand what has happened.”
The family has lost precious years as Faye’s condition gets worse.
“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,” Christina said. “We put our lives on hold because we were always told she was going to get better.”
Because there is no treatment for muscular dystrophy, the main thing the family can do is keep now 12-year-old Faye pain-free and comfortable. She is now “losing the use of her legs very quickly,” which has affected her ability to go to school.
Christina also explained that the family’s home is not designed for a wheelchair, making it “unsafe.”
“She is currently a ticking time bomb, her heart could stop at any minute.”
Faye Condon is also using a ventilator at night, which means she “cannot have a sleepover like other girls in her class.” Her mom lamented she’s “lost the ability to be independent” like her peers.
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