Girl, 12, Underwent 6 Rounds of Unnecessary Chemo After Misdiagnosis, Parents Say Treatment ‘Ruined’ Her Childhood

NEED TO KNOW

• Faye Condon, 12, was misdiagnosed with Juvenile Dermatomyositis, an autoimmune disease, and underwent six rounds of unnecessary chemotherapy from the age of 5
• Her mother, Christina Condon, pushed for a second opinion on the diagnosis, and Faye was eventually told she in fact had de novo Emery-Dreifuss muscular dystrophy by another hospital
• Faye is now losing the use of her legs and relies on a ventilator at night, with Christina describing her as a “ticking time bomb”

A 12-year-old girl underwent six rounds of unnecessary chemotherapy after she was misdiagnosed with an autoimmune condition.

Christina Condon, 36, noticed that her daughter, Faye Condon, was not running and jumping as well as other children her age, leading to Faye first being diagnosed with Juvenile Dermatomyositis (JDM) at age 5, according to the U.K. news agency, SWNS. Per Mayo Clinic, JDM causes skin rashes and muscle weakness.

However, Christina, who lives in Plymouth, England (around 230 miles west of London), was not convinced and wanted doctors at Bristol Children’s Hospital (BCH) to test for other diseases. 

Faye spent seven years of her life undergoing six rounds of chemotherapy, home injections and a muscle biopsy before she was re-diagnosed with de novo Emery-Dreifuss muscular dystrophy (EDMD) type 2 by Great Ormond Street Hospital (GOSH), a specialist children’s hospital located in London. According to the Mayo Clinic, EDMD causes muscle stiffening and weakness over time.

“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 told SWNS. 

She added: “We put our lives on hold because we were always told she was going to get better.” According to the Mayo Clinic, there is no cure for EDMD, and the changes the muscle undergoes are permanent. Therefore, all of the treatment she received had no impact.

She took Faye to the hospital in March 2019 and was then referred to BCH, which conducted initial tests on her.

Christina said that Faye could not walk 200 yards to school and would randomly fall over. She said she had to take videos and pictures as evidence of this to the doctor, according to the U.K. newspaper, The Telegraph. 

Faye was prescribed medicine, but Christina said it did not make a difference to her daughter’s condition. 

The mom told the outlet that “every test” that Faye did for the autoimmune disease was negative and that none of them pointed towards JDM.

Christina said that a muscle biopsy suggested a congenital muscle disease, but this was “overlooked” by doctors. She alleged that budget constraints at the hospital influenced the decision-making.

In November 2019, Faye received her JDM diagnosis and began chemotherapy in January 2021, which Christina described as “horrific to watch.”

Faye also contracted viral meningitis as a side effect of a blood product prescribed to her, according to the London-based newspaper Metro. 

Christina took Faye to her local clinic at Derriford Hospital for a second opinion. Faye underwent genetic blood testing there and was referred to GOSH where she was given the correct diagnosis of EDMD. 

Christina said that all Faye needed to do was take a blood test with specific genetic testing, but claimed that BCH never requested it.

“Those doctors ruined my little girl’s whole childhood. I feel so let down by everybody,” she told SWNS. 

Christina said that Faye is now losing the use of her legs due to her EDMD and that their house is unsafe for her.

She described her daughter as a “ticking time bomb”, adding that her heart could stop “at any minute.” Faye now also uses a ventilator at night. 

Christina is currently in the process of making a formal complaint against BCH.

In a statement obtained by PEOPLE, 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.”