The mother of a young girl from Highbridge who has a life threatening intolerance to some foods including fruit and vegetables is campaigning for the condition to be detected at birth.
Freya screamed for 20 hours a day as a baby due to Hereditary Fructose Intolerance (HFI), a metabolic disorder that can cause liver or kidney failure.
Four‑year‑old Freya was eventually diagnosed the genetic condition that prevents the body from processing certain natural sugars found in fruit, vegetables and many everyday foods. Before her diagnosis, Freya struggled to sleep, and suffered constant sickness, bloating and diarrhoea.
Her mum, Dannie Edwards, told Burnham-On-Sea.com the problems began when Freya was switched to formula milk as a baby. Despite repeated hospital visits, she says her concerns were dismissed as reflux or colic, and at one point she was even questioned about whether she was exaggerating or causing the symptoms. “There was no belief something was going wrong,” she said. “I was at my wit’s end.”
By the time Freya turned one, her condition had deteriorated further. She became lethargic, floppy and drifted in and out of consciousness as her blood sugar levels dropped dangerously low. “The strange thing was the quiet,” Dannie said. “She wasn’t screaming 20 hours a day anymore — and that terrified me.”
It took another four months of pushing before doctors confirmed HFI. Once diagnosed, Freya was placed on a strict diet free from fructose, sucrose and sorbitol. The change was immediate. “She slept through the night for the first time,” Dannie said. “She laughed. She played. She was a different child.”
HFI is currently part of a temporary newborn screening study running until 2027, but families and specialists want it added permanently.
Professor Tim Cox, one of the UK’s leading experts, says the condition affects an estimated one in 18,000 people but is often missed for years. “In the system they get lost,” he said. “Nobody quite believes them, and it takes a long time before you can identify the substance that’s causing it.”
Dannie is now working with HFI UK, the country’s first charity dedicated to the condition. Its founder, Carol Westwood from Devon, was not diagnosed until her 20s after years of being encouraged to eat foods that made her ill. She says early detection would save lives and prevent long‑term liver and kidney damage.
Dannie says “it was a local health visitor who did so much to help Freya and I. She would always tell me to trust my instinct, to be my babies voice, and to advocate for her. I don’t think I would’ve had the strength and confidence to keep pushing for answers without her support.”
The Department of Health says the UK National Screening Committee “welcomes new evidence” that could support adding new conditions to the national programme.
For Dannie, the goal is simple: “I appreciate you can’t screen for everything,” she said. “But this is so simple to solve if you detect it early. We could have avoided so much trauma.”
