A 12-year-old girl in England endured six punishing rounds of chemotherapy that took away years of normal childhood experiences — before her family learned the treatment had been unnecessary because she had been misdiagnosed.
Faye Condon, from Plymouth, was diagnosed in 2019 with Juvenile Dermatomyositis (JDM), a rare autoimmune condition, by doctors at Bristol Children’s Hospital after she began struggling to walk “just 200 yards to school [and] would randomly fall,” her mother, Christina Condon, told LADBible.
Although JDM is not a form of cancer, the condition can be treated with low-dose chemotherapy medication and corticosteroids designed to dampen the immune system and prevent further muscle damage.
Faye subsequently underwent six rounds of chemotherapy, received injections at home and had a muscle biopsy during a seven-year ordeal, according to the Telegraph.
“We have spent her entire childhood in and out of hospital,” Christina told LADBible. “We haven’t been on holidays and we don’t have a house or car that is wheelchair accessible because we were told she was going to get better.”
But Christina said she was never fully convinced by the diagnosis, alleging that medical staff “just threw medicine” at her daughter rather than identifying the true cause of her symptoms.
“Every test for the autoimmune disease was negative,” Christina said. “Not a single test they did pointed towards JDM.”
Faye was later found to have Emory-Dreifuss muscular dystrophy (EDMD), even though her parents said staff at Bristol Children’s had “categorically” told them that “it was not muscular dystrophy.”
She was finally given the correct diagnosis once she was referred to Great Ormond Street Hospital.
“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,” Christina said. “Those doctors ruined my little girl’s whole childhood. I feel so let down by everybody.”
Christina alleges that departmental finances played a role in the botched outcome.
“Everyone could see there was something wrong, but no one wanted to take responsibility for her and do more tests, as tests cost money,” she explained.
EDMD is a rare, life-altering disorder that impacts skeletal and cardiac muscles, leading to severe endurance issues. There is no treatment or cure.
“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 lamented.
