Hereditary Fructose Intolerance (HFI) is a rare genetic condition where people are missing the genetic information for creating the enzyme needed to process fructose. This affects a person’s ability to digest and use fructose, which is a sugar found in all fruits and vegetables.

In addition, other sugars like Sucrose and Sorbitol also turn into fructose as the body digests them, meaning that these also are toxic to people with HFI.

If someone with HFI consumes fructose or sugar, their symptoms will include severe stomach cramps, nausea, fatigue, headaches, brain fog, muscle aches, a low-grade fever and chills, a complete loss of energy, and ironically plummeting blood sugar. If this low blood sugar is not rectified, it can lead to seizures, a coma and eventually death.

Longterm side-effects include severe liver damage.

The only treatment for HFI is to have as little fructose as possible, meaning Freya lives on meat, carbs, dairy products and very small amounts of a few ‘safe’ vegetables – such as potato.

While it is hard managing this diet, almost all symptoms completely improve with a strict diet, making this condition one of the easier metabolic disorders to live with.

For those who are diagnosed shortly after birth, HFI does not require any costly treatments or interventions as the only solution is a ‘safe’ diet.

But the cost on the NHS (and emotional toll to individuals with HFI) compounds hugely when it is left undiagnosed for years.

This leads to years of resources being wasted on numerous appointments and referrals, treatment for severe organ damage, tests for other diseases, and nutritional and dietary assistance for those struggling with severe aversions to food after the trauma of being poisoned for years.

By facilitating an early diagnosis, this huge monetary cost can be avoided along with the physical and phsychological damage that comes with a delayed diagnosis.

Freya was born at 37 weeks, and it was clear from the start that she was not growing and feeding how she should.

As her older brother Isaac has a severe dairy allergy, Freya was put on a dairy-free baby formula – which was later revealed to contain fructose, as do most of the mainstream branded formulas sold in supermarkets.

However, her discomfort and failure to grow only increased, leading to multiple trips to the doctors and A&E. But each time Dannie was told she was overreacting.

Dannie says, “She was hungry, she was really hungry… [but when] you’d give her milk…it was like she was being poisoned. She couldn’t swallow properly, she was trying to spit it out, and when she finished, she would vomit it up.”

Doctors persistently ignored the signs, saying that her vomiting and diarrhoea were due to allergies and a weaker stomach. And this meant that Freya was in the hospital every month, with symptoms that medics refused to take seriously.

After extensive research, when Freya was 9 months old, Dannie asked medics if there was a possibility she had HFI.

But she was told this was ‘too rare’ and Freya didn’t fit the criteria.

A few weeks later, Freya was referred to oncology due to her badly enlarged liver.

Her liver tests had always been abnormal, but doctors always put this down to a virus. 

Poisoned by her own mother?

Each of her symptoms and tests were pointing towards something more serious.

But rather than believing that Freya was unwell, the professionals instead started questioning Dannie’s mental health and accused her of FII (Fabricated or Induced Illness).

Eventually, things got so bad that Dannie had two child welfare officials sleeping in her house to ensure she wasn’t poisoning her daughter.

Just before Christmas, when Freya was one, Dannie called 111 because Freya had begun to act abnormally and lose energy.

She was told to wait for a clinician to call back, but she knew deep down that something was seriously wrong, so she rushed Freya to the hospital.

There, medics discovered her blood sugars were so dangerously low she had to be rushed into resuscitation for an IV dextrose drip.

The clinician’s call only came after Freya had already been stabilised in hospital.

If Dannie had waited for the call back and listened to the advice of those telling her ‘nothing is wrong’, Freya would have died that day.

But things only got worse.

Freya’s blood sugar continued to drop due to her being fed juices and sweetened yoghurt in an attempt to maintain her blood sugars without the need for an IV. And instead of looking at the reason this sugar was affecting her, the accusations of FII against Dannie were instead finalised in court.

Dannie, Freya and Isaac were watched with constant CCTV and put through a rigorous and intense regime of monitoring to try to prevent Dannie from ‘poisoning’ her child.

However, as part of the FII claims, Freya was given a routine Metabolic Diseases Genetic Panel, which flagged HFI.

With this diagnosis, everything changed.

When fructose was removed from Freya’s diet, she slept through the night for the first time. Dannie says that “overnight, she was a different child.”