A 12-year-old girl from England underwent six difficult rounds of chemotherapy that essentially took away years of her childhood, only to find out later that the treatments were entirely unnecessary—thanks to a misdiagnosis.
Faye Condon, hailing from Plymouth, was diagnosed with Juvenile Dermatomyositis (JDM), a rare autoimmune condition, while at Bristol Children’s Hospital in 2019. This diagnosis came after she had begun to struggle with walking even short distances, like the 200 yards to school, and would often fall unexpectedly, as her mother, Christina Condon, explained.
JDM is generally treated—not as a cancer—with low-dose chemotherapy and corticosteroids aimed at suppressing the immune system to prevent muscle deterioration.
Consequently, young Faye went through six cycles of chemotherapy, home injections, and a muscle biopsy over a span of seven years.
“Her whole childhood has been spent in and out of the hospital,” Christina mentioned. “We haven’t been on vacations, and we don’t even have a wheelchair-accessible home or car, all because we believed she would recover.”
Despite this, Christina often felt a nagging doubt about the diagnosis, saying that the medical staff were “just throwing medication” at her daughter.
“Every test they did for the autoimmune disease came back negative,” she noted. “Not a single one indicated JDM.”
In truth, Faye actually suffers from Emory-Dreifuss muscular dystrophy (EDMD). Staff at Bristol Children’s were adamant that it was not muscular dystrophy, which is troubling.
She eventually received the correct diagnosis after being referred to Great Ormond Street Hospital, where a straightforward blood test with specific genetic screenings confirmed it.
“The doctors at BCH were so convinced it was JDM that they never even pursued the necessary blood test,” Christina stated. “Those decisions took away my daughter’s childhood. I feel incredibly let down by everyone.”
Christina also believes that financial constraints within the department contributed to the erroneous outcome.
“Everyone knew something was off, yet no one was willing to take responsibility or conduct further tests because tests cost money,” she explained.
EDMD is a rare and life-altering condition that specifically affects the skeletal and cardiac muscles, leading to significant endurance challenges. Unfortunately, there’s currently no treatment or cure.
“Had we received the right diagnosis seven years ago, when Faye could still walk, we could have enjoyed some family vacations and created more precious memories before she became wheelchair-bound,” Christina lamented.
