Health news

A pill taken by more than a million type 2 diabetics could put patients at risk of a deadly organ-wrecking disease, scientists have warned. 

Medications used to lower blood sugar may trigger a condition called ketoacidosis, otherwise known as a ‘diabetic attack’.

This happens when levels of harmful compounds called ketones build-up in the blood, triggering a range of life-threatening complications.

Swedish researchers found that drugs called SGLT2 inhibitors could trigger the condition, particularly in type 2 diabetics with a low body weight.

Around 10 per cent of people with type 2 diabetes have a body mass index that isn’t in the overweight or obesity category, according to charity Diabetes UK.

Experts have previously suggested that the drugs encourage the body to burn fat for energy, which fuels the release of ketones. 

The new warning follows separate research showing that deaths from ketoacidosis are on the rise in the UK.

Medications used to lower blood sugar may trigger a condition called ketoacidosis, otherwise known as a ‘diabetic attack’

The new study, which is published in The Lancet Diabetes and Endocrinology journal, suggests the drugs – prescribed to around a third of the UK’s type 2 diabetics – may be a trigger for high-risk patients.

Scientists from the prestigious Karolinska Institute analysed the health records of 280,000 type 2 diabetes patients treated with SGLT2 inhibitors, such as dapagliflozin.

Such drugs help lower blood sugar by increasing the amount of sugar released by the kidneys via urine. 

Type 2 diabetics have too much sugar in their blood –  a result of their body’s insensitivity to insulin, which converts sugar in food into energy.

The drugs are also prescribed to protect against heart failure, kidney disease, and studies have shown they can even help with weight loss.

There are four types of SGLT2 inhibitor available in the UK, which are taken as once-daily tablets.

As well as dapagliflozin, which goes by the brand name Forxiga, these include canagliflozin, known as Invokana; empagliflozin, sold as Jardiance; and ertugliflozin, known as Steglatro. 

Researchers found patients were at greatest risk of ketoacidosis if they had previously suffered the condition, had high blood sugar, were underweight or showed signs of malnutrition.

Those with a history of dangerously low blood sugar, known as hypoglycaemia, were also at high risk. 

Suffering an infection was the most common trigger of ketoacidosis, they said. 

Meanwhile, kidney problems, stroke and major surgery were also more common among patients who developed it.

Crucially, while the risk was highest during the first few months of treatment, researchers said it persisted the whole time patients were taking the drugs. 

This builds on previous studies, which have mainly examined the risk during the early stages of treatment. 

‘SGLT2 inhibitors provide medical benefits for many patients,’ explains Peter Ueda, assistant professor at the Department of Medicine in the Karolinska Institute. 

‘Our findings are not primarily about avoiding treatment, but about improving our ability to identify high-risk patients and use these medicines more safely.’

The researchers also hope the findings will help doctors decide when treatment should be stopped.

They said they now plan to study their findings in more detail and investigate other rare but serious side effects of modern diabetes medicines. 

Last year researchers from Imperial College London found ketoacidosis cases rose by 81 per cent between 2015 and 2023.

The NHS says symptoms of can include feeling thirsty and needing to urinate more often than usual.

People may also experience stomach pain, nausea or vomiting, diarrhoea and blurry vision.

Other warning signs include unusually deep breathing, fruity-smelling breath and feeling extremely tired, sleepy or confused.

A widely prescribed antidepressant is out of stock in the UK, health chiefs have warned.

Venlafaxine tablets, used to treat depression, anxiety and even menopause, will be unavailable until November in a 75mg dosage.

The drug comes in various doses and is prescribed more than eight million times across Britain every year, according to the latest available data.

However, officials from the Department of Health and Social Care (DHSC) have warned that it’s now in short supply.

It comes after a turbulent summer of medicine shortages in Britain, which pharmacists have branded a ‘national crisis’.

Officials from the DHSC said new prescriptions of  75mg venlafaxine should not be issued until the shortage is over.

The warning relates to what’s known as immediate release tablets, prescribed for more severe mental health problems. These pills work quickly and are taken twice-daily.

Immediate release venlafaxine is not as widely prescribed as so-called modified release versions, which are taken once a day and work by releasing the medicine more slowly into the bloodstream.

A widely prescribed antidepressant is out of stock in the UK, health chiefs have warned

Some forms of modified release venlafaxine medicines can be used to support additional demand for the medicine, the DHSC said.

These include the 37.5mg, 75mg and 150mg capsules, as well as 75mg tablets.

However, they warned that other types cannot be prescribed to help. 

Among them are 37.5mg immediate release tablets, as well as 37.5mg, 150mg, 225mg and 300mg modified release tablets.

The 225mg and 300mg capsules can also not be used to help, nor can the 37.5mg/5ml and 75mg/5ml liquid versions.  

Venlafaxine is what’s known as a selective noradrenaline reuptake inhibitor, or an SNRI for short.

SNRIs are thought to work by increasing the levels of chemicals that control mood, serotonin and noradrenaline.

When effective, the medicines are said to reduce stress levels and negative thoughts that come with conditions like depression and anxiety.

The drugs are different from other popular antidepressants, known as selective serotonin reuptake inhibitors (SSRIs), which work by just increasing serotonin levels.

Someone may receive an SNRI when the SSRI has not been effective, or they have responded badly to SSRI side effects, for example.

According to DoseTrend, which tracks NHS prescribing data, more than eight million prescriptions for venlafaxine have been issued in the last 12 months.

The majority – around 6.5 million – were dispensed in England.

Venlafaxine is also used to treat hot flushes and night sweats for menopausal women, as the chemicals it targets can help to control temperature.

Experts have previously warned that access to other medicines in Britain is at its most fragile point in years, leaving patients at risk of stroke, heart attack and seizures.

‘These shortages are some of the most severe the UK has experienced,’ Oliver Picard, chair of the National Pharmacy Association, said.

‘Our medicine market has never been so volatile, with patients and primary caregivers at the sharp end of events outside of their control.

‘It is deeply distressing to find patients who have travelled from pharmacy to pharmacy to find the medicines they need without success.

‘Although medicine shortages are frustrating and worrying, we are clear that in some instances they pose a serious risk to patient safety.’

Ade Williams, lead pharmacist at Bedminster Pharmacy in Bristol, said the lack of drugs had become a ‘national crisis’.

Currently, there are shortages for a range of medicines in Britain including ramipril, propranolol, estradiol, creon, co-codamol, diamorphine and cefixime.

Veteran newsreader Jon Snow and actors Sir Jonathan Pryce, Suranne Jones and Vicky McClure are among 60,000 people to have signed a letter demanding ‘better for everyone affected by dementia’.

The petition, which will be delivered to Downing Street today, calls for a ‘bold and ambitious’ plan for earlier dementia diagnoses as new research reveals many patients face crippling waits of over six months.

Alzheimer’s Society, which gathered the signatures, wants a new national target to be put in place to ensure everyone with dementia receives an accurate diagnosis within 18 weeks of a GP referral, as well as a care plan and access to treatment where appropriate.

It said such an ambition has already been met for all other major health conditions, such as cancer and heart disease.

The Daily Mail revealed in June that Mr Snow had been diagnosed with Alzheimer’s disease – the most common form of dementia – in 2023.

The letter urges the Government to ‘set an ambitious goal to reduce the number of people that die from dementia; ensure robust plans are in place to deliver disease modifying treatments, as they become available; support the delivery of high-quality dementia training for the social care workforce; and ensure everyone can access an early and accurate diagnosis’.

The lack of a firm target means services could be cut back, with more patients left waiting months or years while their condition worsens, the charity has warned.

In some instances this could mean they become too far progressed to benefit from breakthrough drugs, which must be taken in the early stages of disease.

The Daily Mail revealed in June that Jon Snow (pictured with his wife Dr Precious Lunga) had been diagnosed with Alzheimer’s disease in 2023.

Everyone experiences dementia differently. Use this checklist to help you make a note of your symptoms before you talk to your GP.

The letter comes as its survey of over 1,000 UK carers of people with dementia found just under half (45 per cent) waited more than six months for a dementia diagnosis after first seeking help.

Among the 868 carers supporting someone who had received a formal dementia diagnosis, 46 per cent said the time taken to receive a diagnosis affected their work, just over a third (35 per cent) said it made it harder to plan for the future, and three in 10 felt ‘life was on hold’.

Michelle Dyson, chief executive at Alzheimer’s Society, said it would never be accepted for someone to be ‘left to work out the next steps on their own’ after being diagnosed with a disease such as cancer, but that this is ‘the reality for too many people affected by dementia’.

She said: ‘A dementia diagnosis can bring answers, understanding and access to the support, treatment and care that can make a real difference to people’s lives.

‘But we know things can be so much better.

‘Too many families spend months, and sometimes years, waiting for answers while their dementia progresses. It is like trying to plan a journey without knowing where you are going or when you will arrive. Behind every delayed diagnosis is a family living with uncertainty and trying to prepare for the future without the support they need.’

The Daily Mail and Alzheimer’s Society have partnered in a drive to defeat dementia, which claims 76,000 lives a year as Britain’s biggest killer.

The Defeating Dementia campaign aims to raise awareness of the disease, in an effort to increase early diagnosis, boost research and improve care.

Michelle Dyson, chief executive at Alzheimer’s Society, said too many people are left to work out the next steps on their own after receiving a dementia diagnosis.

Line of Duty actress and Alzheimer’s Society ambassador Vicky McClure is among the signatories to the letter.

Ms Dyson previously told the Daily Mail the government’s upcoming dementia plan will not be ‘worth the paper it is written on’ after the 18-week target was removed from a recent draft despite appearing in an earlier versions.

She also accused the NHS of treating dementia patients as ‘second-class citizens’ who are ‘cast aside’ and typically sent home with little more than a leaflet.

A Department of Health and Social Care spokesperson said: ‘This Government is determined to strengthen the support that is available both to individuals affected by dementia, and the family members who look after them.

‘We are bringing forward the timetable for Baroness Casey’s commission on reform of the social care system, and we are appointing a new dementia tsar to help lead our work in that area, as recommended by Baroness Casey.

‘We are also implementing a new action plan for unpaid carers to ensure that they receive the support and recognition they deserve for the selfless work they do.’

Naive teenagers are seemingly grooming each other into harmful addictions with nicotine pouches and are completely unaware of the dangerous consequences.

The youngsters brag online about being able to tolerate the pain the products cause, bluntly telling each other that discomfort and nausea ‘is normal’.

But what if the pain becomes unbearable? They say don’t stop using it, just put the pouch in a different part of the mouth that doesn’t hurt.

More than 4,000 users in an online community dedicated to nicotine pouches, chat about their addictions which involve more deadly substances such as LSD and Ecstasy.

And in another community, which the Daily Mail is choosing not to name, a staggering 15,900 members similarly gather to discuss their shared battle with nicotine pouch addiction.

Users on the messaging app spur each other on to continue using the white pouches which sit on the gum lining where the nicotine is absorbed into the bloodstream.

This is the reality of a frightening nicotine pouch phenomenon gripping young people from inside their own homes.

And most worryingly, there are currently no regulations or age restrictions in place in the UK, meaning anyone, of any age, can legally buy them.

Pictured: Nicotine pouch ‘pods’ on a table. The product is becoming increasingly popular in the UK

A woman placing a white pouch into her gum lining where the nicotine is absorbed in the bloodstream

That will change on October 29 this year, when the Tobacco and Vapes Act 2026 comes into effect.

Until then, young people can purchase nicotine pouches freely, unless a seller chooses to enforce a voluntary age check.

One online community user, called Marcus*, says that he was 15 when he started using nicotine pouches having switched from vaping.

Now 17, he is unaware of the detrimental health implications nicotine pouches are having on his body, even sharing his experiences on Class-A drugs; LSD, Ecstasy and Mephedrone with users in the chat group.

He boasts on the platform that he has been using nicotine pouches for two years and that he is ‘such a veteran’.

When asked what someone should do if their mouth is hurting from sustained pouch use, he simply says: ‘Use the other side.’

Another user who referred to himself as a ‘nicotine pouch beginner’, asked the group chat ‘does anyone get nauseated after spitting out the snus and is it a beginner thing?’

One member terrifyingly responds: ‘Yes it is, it is normal’.

A user on ‘Snus’ shared a picture of two Nike shoeboxes full of used nicotine pouch pods which took just one year to fill

In the larger online community, a user shared a photograph of their painful ulcerated gums and two Nike shoe boxes which they completely filled with used packs in just one year.

They say that they could get through a single tub, which contains 20 pouches, in just five hours by using two at a time.

While there are about 10-12mg of nicotine per cigarette, there are nicotine pouches – incorrectly labelled snus after their Swedish tobacco-filled counterparts – with up to 150mg per pouch available for purchase online.

I bought a pack of 56mg Iceberg Strawberry Banana Gum flavoured nicotine pouches online and did not have to verify my age at any point.

Genuine snus is a tobacco product Swedes have used for generations, tucked under the upper lip much like the tobacco-free pouches sold in Britain.

But public health researchers in the Scandinavian nation admit that far less is known about the risks around newer white pouches.

Although, not everyone believes nicotine pouch use in the UK amounts to a crisis – yet.

Dr Marina Murphy, Director of Scientific Affairs at Haypp, the current largest retailer of nicotine pouches in the world says ‘the story is about switching rather than starting’.

She points out that the same nicotine found in cigarettes is used in medicines approved for use by children as young as 12.

She also acknowledged that ‘nicotine will make you sick and it is well known it will make you very nauseous’.

But Dr Murphy draws a distinction between what she calls dependence – a habit – and addiction with nicotine pouches.

‘I would say there is a difference between addiction and dependence. And the difference is that addiction is habit plus harm and dependence is habit,’ she says.

A screenshot of a conversation with a child online who gave advice on pain caused by pouches

The user said that they were just 15 when they started using nicotine pouches

*Marcus, who is not his real name, bragged that after using nicotine pouches for two years that he is a veteran

However, a legal age limit in the UK, Dr Murphy says ‘makes absolute sense and is completely appropriate’.

She continues: ‘But it’s interesting to consider there’s currently no legal age limit.

‘There has been a lot of advertising because they could advertise, yet there’s absolutely no evidence to support any claims of widespread underage use.’

Although, dentists say that the damage nicotine pouches cause is already visible from their chairs.

Bupa Dental Care’s Head of General Dentistry, Dr Anni Seaborne, explains that repeated use in the same spot causes keratotic changes, white lesions where the pouch consistently sits, as well as gum recession that exposes the roots of the teeth.

‘People tend to have a favourite part of their mouth they pop the pouches in, if you’re using that as soon as you do your oral check-up, we can see it a mile off,’ she says.

According to Dr Seaborne, dentists are ‘finding that it is a younger population using nicotine pouches’ who are on the receiving end of these painful oral issues.

‘I have had one incident where I had to have a conversation with someone who was under the age of 18 because it was obvious something was happening and I had to make sure that they were using pouches,’ she says.

But these health implications are dismissed by younger users because they are not aware of the risks involved.

She continues: ‘I think in general they just don’t have that educational awareness of the detrimental effects it’s having on their oral health.’

Private GP Dr Lucy Hooper, echoed Dr Seaborne’s concerns and says nicotine pouches also pose a significant threat to the body.

‘It’s main impact is on the blood pressure,’ she says. ‘It might sound small, your blood pressure increasing by two or three points but after years, it increases the risk of cardiovascular disease.

‘Anxiety is another effect I often see and cortisol changes. Nicotine pouches will energise but for many it might feel overwhelming.’

The problem Dr Hooper adds is due to the addictive nature of nicotine, if users spot these issues, it might not stop them from using them altogether.

While some critics dispute the severity of nicotine pouch use amongst young people in the UK, the trend has been festering on mainstream social media.

One account shares stomach-churning livestream content of young people to more than 50,000 followers on Instagram.

The disturbing trend has taken off online with some social media users sharing their preferred brands and flavours

Dr Marina Murphy, the Director of Scientific and External Affairs at Haypp, the world’s largest online nicotine pouch retailer

The traumatic content shows young people going head-to-head against one another to see who can put the most high-content nicotine pouches, often ending when one is violently sick.

TikTok has confirmed that the account has been banned from their platform though he continues to share the same content on Instagram.

Amy* began vaping at 20 for ‘fun on nights out’ while at university, only for it to spiral into a nicotine habit she still hasn’t shaken.

She explains that it was a trip to south-east Asia, where vapes are illegal in several countries including Cambodia and Thailand, that pushed her towards nicotine pouches for the first time.

‘That’s how it spiralled,’ she says. ‘I have stopped vaping since but I haven’t stopped using snus.’

Now working in PR five years after graduating, Amy is trapped in a cycle of addiction and is not aware of the damage she is doing to her mouth.

‘All the time I go, “okay, I’m going to stop now” and I’ve gone through endless nicotine patches and they work but then I go home and I still use it or it comes to the weekend and I hang out with my friends so then it just spirals,’ she says.

Amy believes the industry’s marketing plays down the risks, and thinks clearer warnings would change people’s behaviour.

‘I feel that if more of the health implications were in plain sight for everyone that was going to buy these things, I do think it would put people off. The real effects should be publicised.’

She blames the pouches’ sleek packaging for part of their appeal, describing a display in a shop near her that she says ‘honestly looks amazing’, with rows of different flavours and colours.

‘Unlike vapes I notice a lot of silver and darker colours and it appeals for a lot of people in their twenties, that’s the sort of demographic.’

Amy was shocked to discover nicotine pouches carry no legal age limit in the UK at all, and says she would support banning them outright.

Bupa Dental Care’s Head of General Dentistry, Dr Anni Seaborne said dentists can spot nicotine pouch use a ‘mile off’

Dr Lucy Hooper said that nicotine pouches pose a significant threat to your body just as much as your oral health

‘I don’t really understand why there’s not a legal age limit on nicotine pouches when there are with vapes. I’ve seen so many school kids, more and more of them using snus and it’s wrong.

‘I’d love it if they banned it to be honest. I’d love to not be able to get any hands on it, let alone kids being able to get them as there aren’t legal age requirements.’

The scale of the issue is also beginning to surface in official figures.

A report by Action on Smoking and Health (ASH) found that around one in a hundred young people between the ages of 11-17 use nicotine pouches.

This amounts to an estimated 63,000 young people of which boys are twice as likely to have used the product.

Evidence suggests young people who already smoked cigarettes or vaped are far more likely to move on to nicotine pouches than those with no prior nicotine use.

And the black market for illegal nicotine pouches is growing just as fast.

In 2025, the amount of illegal nicotine pouches has increased by 974 per cent, a tenfold rise on the previous year, suggesting a government-imposed age restriction is urgently required.

The report by Vape Club found that 660,000 nicotine pouches with potentially harmful ingredients were seized at UK borders and retailers.

Vape Club is now calling on the government ‘to act swiftly to stamp out this growing black market, before it sweeps the nation’.

From October 29, the Department of Health and Social Care confirms the age of sale for all vapes and nicotine products, including pouches, will rise to 18.

New restrictions on vending machines and a ban on free distribution come into force the same day, with a further ban on advertising nicotine products due to follow from June 2027.

Addictions therapist Gonzalo ‘Kanny’ Mr Sanchez, who works at the Priory Group, says he has seen nicotine pouch use among young people surge in recent years.

‘I think this year it’s exploded,’ he says. ‘If I think four years ago how many people did we see putting nicotine pouches in their mouth or three years ago, I can’t remember.

‘There are so many 20-year-olds I see nowadays using them no matter what they’re doing. I think it has dramatically increased.’

When asked about the thousands of young people using snus and harder drugs online, Mr Sanchez points to a ‘gateway effect’.

‘One of the strongest correlations I’ve seen is with people who use nicotine pouches and drugs like LSD, mushrooms and psychedelics. It has been quite apparent to me.’

He adds that the brain does not finish developing until the age of 25 so the younger you start using snus, the more detrimental it is.

‘The younger you are, the younger you start and you are first exposed to these chemicals, especially nicotine, the more difficult it is going to be.

‘And the more susceptible you’re going to be to other forms of chemical substances later in life.

‘I believe that it should be illegal to sell nicotine to under 18s just like it is with alcohol.’

A TikTok spokesman said: ‘We do not allow content showing, promoting, or using drugs or other regulated substances recreationally.’

‘We also do not allow content showing or promoting young people participating in using alcohol or tobacco.’

* Amy and Marcus are not their real names

For decades, Parkinson’s disease has been diagnosed using a laborious process of neurological and physical examinations.

But now, researchers in India say the disease could be detected with up to 99 percent accuracy using little more than a drawing test.

The disease is a devastating neurological disorder where neurons become damaged, causing progressively worsening tremors and movement problems that eventually rob patients of their independence.

Suffered by one million Americans, the disease is thought to be rising in the US, which experts have blamed on pollution, pesticides and smoking.

In their research, the team analyzed results from a previous study that involved 66 people, including 31 with Parkinson’s, who were asked to complete two drawing tasks.

In these tests, participants traced spirals and then meanders, or angular-shaped continuous lines. They also held a biometric pen that tracked their hand movements. 

Overall, those with Parkinson’s were much less able to trace the lines than those who did not have the condition. 

For the new study, the team extracted this data and used it to train a model, which they said could now be used to detect Parkinson’s.

Researchers say that a handwriting trait could be used to detect Parkinson’s disease

In Parkinson’s, the breakdown of neurons can cause symptoms including tremors – movements outside the person’s control – which may leave sufferers unable to hold a pen steady.

Nearly all Parkinson’s patients experience tremors, which may emerge early in the disease or during its later stages.

Other conditions can also cause tremors including hyperthyroidism, low blood sugar, certain medications and withdrawal from substances including alcohol.

The team said in their study: ‘Handwritten images provide spatial characteristics of stroke irregularities, tremor-induced distortions and shape deviations.

‘In contrast, sensor-based handwriting signals capture motor behavior, which includes velocity fluctuations, pressure inconsistencies and coordination.’

In the study, published in the journal Discover Computing, researchers fed the images and data from hand movements into different AI systems.

Each model then evaluated spatial irregularities and differences in motor control and hand coordination between those who did and did not have the condition. 

The data from each was then processed into an algorithm called SNAKE, which was then used to re-evaluate each drawing and determine which participants did or did not have Parkinson’s.

Shown above are the spirals, top row, and meanders, bottom row, that were used to test for Parkinson’s. The two drawings on the right are by Parkinson’s patients.

The above shows a meander drawn by a person who does not have Parkinson’s disease (left) and who has Parkinson’s

The above shows a spiral drawn by a person who does not have Parkinson’s disease (left) and does have Parkinson’s

According to the researchers, this algorithm correctly diagnosed Parkinson’s using the meander drawings in 98.95 percent of cases.

When analyzing spatial patterns, it correctly detected Parkinson’s in 97.7 percent of cases.

The researchers said the test could be a less invasive way to diagnose Parkinson’s. It was not clear whether it would also help to detect the disease in the early stages.

It is not clear whether the algorithm may now be used by doctors to help them confirm a Parkinson’s disease diagnosis. 

The dataset was small, including 66 participants, and the algorithm was not evaluated using a new group of participants or new drawings.

The researchers, from Siksha ‘O’ Anusandhan University, concluded: ‘This study proposed a multimodal handwriting-based framework for Parkinson’s disease detection.’

When two-year-old Kole Pearson failed a series of routine newborn hearing tests, nothing could have prepared his parents for the deadly – and incurable – diagnosis their son would receive only months later.

Indeed, medics initially suspected Kole, from Ellesmere Port in Cheshire, to be autistic or have Global developmental delay (GDD) after his mother, Beth Gordon, flagged his missed milestones and noted other symptoms like stimming and a floppy neck.

However, following a third failed hearing test, 33-year-old Ms Gordon recalled watching a TikTok video of a child with Sanfilippo syndrome – a rare, neurodegenerative disorder – and had a ‘motherly instinct’ her son fit the bill.

After flagging the possibility with Kole’s doctors, Ms Gordon was informed autism and Sanfilippo syndrome can present very similarly in the early phases of a child’s development – further raising her suspicions.

It was then, Ms Gordon said, she and her partner Daniel Pearson, 40, pushed for genetic testing to rule out – or confirm – their worst fears.

Following a series of tests, Kole received the life-altering – and devastating – diagnosis of Sanfilippo syndrome, also known as childhood dementia, in April of this year.

To make matters worse, doctors confirmed Kole’s variant of the condition is Type A – and there are zero treatment options available on the NHS.

Ms Gordon and Mr Pearson were simply told by medics to go home, and to ‘please love and make lots of memories’ with Kole in the limited time he has left.

Two-year-old Kole Pearson was diagnosed with a rare and deadly variant of childhood dementia earlier this year 

Kole’s mother, Beth Gordon, realised something was wrong after he failed a series of newborn hearing tests – something she had not experienced with her other children (Pictured: Kole with siblings Kolby and Alya) 

After Ms Gordon watched a TikTok video of a child with Sanfilippo syndrome, she realised Kole presented with similar symptoms

Yet despite such slim odds, Ms Gordon and Mr Pearson refused to accept it was the only option for their son – determined to enroll Kole in trial therapy only available in America hailed as ‘lifesaving’ for children with Sanfilippo syndrome.

The only catch is the steep price tag that comes with the treatment – with costs coming in at a mammoth £2,000,000.

The family – which includes siblings Kolby, 10, and Ayla, 8 – have now set up a GoFundMe campaign in hopes of raising the vital money, but have currently only raised just shy of £15,000 – a fraction of the money they so urgently need.

Ms Gordon spoke to the Daily Mail about how standard hearing tests turned into a nightmare for her young family – but how she will stop at no end to be successful in fundraising for Kole’s future.

She said: ‘Kole is the happiest little boy ever. People constantly comment on how happy and loveable he is. But I always had a motherly instinct something was not right with his health.

‘One of the first red flags was he did not react properly during reflex exam at six weeks old. He also failed a newborn hearing test.

‘He then failed two more hearing tests – we later learnt he has severe hearing loss in his left ear and mild to moderate hearing loss in his right.

‘It was always suspected he had Global developmental delay (GDD), as a result. Then autism was put on the table.

Kole’s family are attempting to fundraise £2,000,000 for treatment that could become available in America – and save his life

Ms Gordon describes Kole as ‘the happiest little boy ever’ (Pictured here with siblings Kolby and Ayla)

‘I did believe Kole could potentially be autistic – he was a flappy baby, very stimmy and very sensory seeking.

‘I now know autism and Sanfilippo present very similarly in young children – which is often why Sanfilippo can be misdiagnosed or not picked up on until the child is five or six years old.’

Ms Gordon, who is now a full-time carer for her son, described the penny finally dropping on what was wrong with Kole one night when scrolling on social media – following yet another failed hearing test.

She said: ‘After the hearing test, coincidentally I was scrolling on TikTok and came across a little girl in America that was identical to Kole – she had Sanfilippo syndrome.

‘I then googled the disorder and started crying – instinctively I knew Kole matched. I then rang my mum to tell her that I knew this condition is what Kole has.’

It was then Ms Gordon and Mr Pearson, a self-employed scaffolder, went to Kole’s paediatrician at the Countess of Chester Hospital in Cheshire, where Ms Gordon recalled asking for urgent genetic testing to confirm the potential diagnosis.

She said: ‘Kole’s doctors said Sanfilippo is so rare that it probably is not that – I was brushed off constantly, but I just had a gut feeling.

‘So, in April of this year, I went back to a different paediatrician at the hospital. I said, “Again, I think he has Sanfilippo syndrome,” and he was the first person that said, “I see it – but we are still waiting for the test results, which could take anything between 6 to 18 months to come back”.

Kole was initially believed to be autistic – with symptoms of the condition very similar to that of Sanfilippo syndrome in young children 

‘Luckily, the results of Kole’s genetic testing were really quick.’

In April 2026, Kole’s family officially received the heartbreaking diagnosis he has Sanfilippo syndrome Type A – the more severe variant of the condition with a rapid decline rate.

The moment Kole was diagnosed – and the words spoken to her by attending medics – still haunt Ms Gordon to this day.

She said: ‘The night before we got the results, I just knew – you’ve got this awful feeling.

‘We went to the hospital the following morning, and the doctor said: “You are right, he has got Sanfilippo syndrome – Type A. It’s the most severe and the quickest progressing.”

‘We were told Kole’s condition was terminal, to please love him and make lots of memories. The NHS are very textbook – when they say it is terminal, it is terminal.

‘It was a mixed bag of emotions. I was devastated – but I want to fight on so no parent has to feel like I do, so no parent has to go into a hospital room and be told, “There is no cure, go home and love them.”

‘No family deserves that.’

The average life expectancy for affected children is usually mid-to-late teens. For those with Type A, such as Kole, life expectancy ranges from 11-years-old to 19-years-old on average

Following Kole’s diagnosis, Ms Gordon recalls being told by medics ‘there is no cure, go home and love him’

Sanfilippo syndrome, also known as Mucopolysaccharidosis type III, is a rare and terminal neurodegenerative disease, presenting in variants A, B, C and D.

Typically, affected children will develop to a certain point before regressing – causing them to lose all skills they have gained, begin experiencing movement disorders and having seizures.

Currently, there are no effective treatments for Sanfilippo syndrome available in Britain; however, clinical trials are available in the United States.

The average life expectancy for affected children is usually mid-to-late teens. For those with Type A, such as Kole, life expectancy ranges from 11-years-old to 19-years-old on average.

Ms Gordon, however, is determined this will not be the case for her son.

Alongside medics at the Royal Manchester Children’s Hospital – where Kole is now being monitored – they have discovered a revolutionary treatment for children afflicted with Sanfilippo, a gene therapy known as UX111.

UX111, developed in the United States, is an experimental therapy designed to work by fixing the root genetic cause of the condition, delivering healthy genes to the affected cells.

It is currently still awaiting Food and Drug Administration (FDA) approval; however, a decision is expected within the next month.

Kole’s family have set up a fundraising campaign to raise the £2,000,000 needed to send the toddler to America to receive UX111 – a revolutionary treatment for sufferers of Sanfilippo syndrome

UX111 treatment could allow Kole to lead a normal life – with recepients of the treatment now reportedly playing football, reading and even running

If approved, the treatment would give Kole the best chance of leading a normal childhood – and potentially full adult life.

Ms Gordon said: ‘I can’t imagine my life without him – that is why I am so frantically and urgently fundraising for the potential treatment.

‘Children with Sanfilippo who have had the same therapy are now running, reading and playing football – it would completely change Kole’s whole prognosis.’

Kole’s family have since set up a GoFundMe campaign to raise the whopping £2,000,000 needed to send the toddler to America to receive UX111.

Ms Gordon said: ‘Two million pounds is such a massive amount of money, but if two million people all donated £1, that mountain my family have to climb wouldn’t feel so huge.

‘SFS doesn’t wait for anybody. We don’t have time to sit and wait and see what our government says and decides. It could take years and years for treatment approvals on the NHS, and by then it’s too late and Kole is regressing.

‘Our one goal is to get Kole over to America. He will have his treatment, and do you know what? He’ll live such a healthier, happier, longer life.’

A spokesperson for the Countess of Chester Hospital NHS Foundation Trust said: ‘We recognise how distressing it is for any family to receive a diagnosis of a serious condition, especially when it is life-limiting.

‘Our staff are focused on communicating difficult information with compassion, sensitivity and clarity, and they support patients and their families throughout diagnosis, care planning and ongoing care.

‘Patient confidentiality is paramount and so we will not comment on the care of an individual patient.’