Roman Weedon, a lively and self-assured young boy with a passion for football, seemed to have a seamless start when he began primary school. According to his mother, Molly, who works in learning support, Roman quickly made friends, thrived in his health, and was progressing well in his early reading and mathematics.

However, an unexpected turn of events occurred in March 2022 when Roman, then just four years old, contracted chickenpox. What initially appeared as a routine childhood illness soon transformed into a more concerning situation.

Roman’s symptoms began mildly, with only a few spots on his back and face, and occasional doses of Calpol to manage a slight fever. “We really weren’t worried at first,” Molly, who resides in Chesham, Buckinghamshire, with her husband Bradley, a builder, and their children Roman and Delilah, recounted.

Despite the initial mild symptoms, Roman’s condition took a turn for the worse as his temperature soared to 40°C and remained high for several days. Concerned, Molly contacted the NHS helpline at 111 and was advised to see a GP. However, the doctor confirmed it was merely chickenpox and recommended continuing with Calpol.

But after a few days, Roman’s temperature rose to 40C and stayed high.

Molly rang 111 and on their advice took Roman to the GP – only to be told it was chickenpox and to persist with Calpol.

But that night, after putting Roman to bed, she was woken in the early hours by a crash and a cry of ‘Mum’ – and found her son collapsed on the bathroom floor.

‘I tried to get him up but his legs just gave way,’ recalls Molly. Bradley rushed to help and they carried their son back to bed. Half an hour later, he began vomiting violently, which continued all night.

‘I’d never seen anything like it,’ said Molly, who arranged an emergency GP appointment for Roman the next morning. Although the first doctor she saw seemed unconcerned, after seeking a second GP’s opinion, she took her little boy straight to A&E.

Eight-year-old Roman Weedon, who contracted chickenpox in 2022 at the age of four

Medics were baffled by his symptoms – vomiting, confusion and loss of balance – which were unusual for chickenpox (as well as the hallmark rash it can cause fever, tiredness, nausea and headache).

Roman was admitted to hospital and given antibiotics to treat bacterial meningitis – thought to be a possible cause. ‘But these had no effect’, says Molly, who spent the night at his bedside.

By now, Roman was terrified and disorientated, ‘screaming and hitting out’, recalls Molly.

The following afternoon a doctor said they thought he had encephalitis, a serious neurological condition where the brain becomes inflamed and swells.

There are around 6,000 cases of encephalitis every year in the UK.

While it can affect any age, younger children and older people are more at risk, as their immune systems are less robust.

Between 10 and 20 per cent of cases prove fatal: The vast majority of those who do survive can be left with life-long disabilities, including language and cognitive problems, fatigue, and epilepsy. 

Encephalitis can be caused by an infection directly invading the brain (known as infectious encephalitis) or through the immune system going into overdrive and attacking the brain (autoimmune encephalitis).

Roman with his father Bradley, 34, mother Molly, 30, and little sister Delilah, four

In Roman’s case, it was the infectious form, a complication of chickenpox – the most common preventable cause of encephalitis in both adults and children.

Molly and Bradley are sharing their experience to raise awareness of the severity of chickenpox and to urge parents to ensure their children get the chickenpox jab being rolled out on the NHS.

It will be given in a new combined vaccine, MMRV, which replaces the MMR (measles, mumps and rubella) jab, adding varicella (chickenpox).

As Professor Benedict Michael, chair of infection neuroscience at the University of Liverpool, told Good Health: ‘Chickenpox and its complications are preventable by taking advantage of this free vaccine.

‘Other countries, such as the US and Australia, have been vaccinating against chickenpox for years. It’s time that we stopped being so laissez-faire about it.’

Research suggests around 77 per cent of UK children will have had chickenpox, caused by varicella-zoster virus (VZV), by the age of five – and 90 per cent will get it by the age of 15.

‘Most children will recover without complications, but chickenpox can cause life-threatening consequences,’ says Dr Stephen Ray, a paediatric infectious diseases lecturer at Oxford University.

Perhaps the most severe of these is encephalitis, as the virus invades the brain and nervous system.

Molly and Bradley are sharing their story to raise awareness of the severity of chickenpox

VZV initially enters the body through the nose and throat and is transported in the bloodstream around the body – including to the skin, where it causes the characteristic rash.

But the virus can also travel along nerves and invade the central nervous system, explains Professor Michael. This can lead to two potentially life-threatening brain conditions.

Encephalitis, inflammation of the brain itself, occurs in approximately one in 5,000 cases of chickenpox in children.

Professor Michael explains: ‘The virus can damage brain cells directly and can also affect the blood vessels that feed the brain, causing blockages and cell death.’

Meningitis, or inflammation of the protective membranes surrounding the brain and spinal cord, can also develop as a complication of chickenpox, but is less common. Symptoms include fever, severe headache, neck stiffness and sensitivity to light.

‘The effects on the patient will depend on which part of the brain has been damaged – but as the brains of children are still developing, the extent of damage from chickenpox is often only apparent as they get older,’ says Dr Ray.

More common than brain damage, chickenpox can trigger secondary infections, which are also potentially life-threatening.

For instance, bacteria – such as Staphylococcus aureus – that live on skin enter the body via a scratched chickenpox scab, which can in some cases lead to sepsis. ‘I have seen children die on my wards from this – it’s heartbreaking,’ says Dr Ray.

Like many, Roman’s parents were unaware of the possible complications – and were horrified to be told by a doctor that if it was encephalitis, ‘it’s rare for a child of his age to recover – and if he does, he’ll probably never walk again’, Molly recalls. ‘Only days before, Roman had been a healthy, active, happy little boy.’

The diagnosis was confirmed by a lumbar puncture (where a sample of spinal fluid is analysed for white blood cells which indicate inflammation), but despite being sedated, he woke up during the procedure.

‘This was very traumatic for him – he began thrashing around,’ says Molly. After another lumbar puncture and an MRI to confirm it was encephalitis, Roman was given the antiviral drug acyclovir.

Although it began to work within hours, he spent nearly three weeks in hospital.

‘By the end he was like a ghost of himself, his pyjamas were hanging off him,’ says Molly.

Roman initially needed a wheelchair as the damage to his brain affected his balance and mobility. He was also unable to grip a pencil and needed help to dress.

He had intensive physiotherapy to strengthen his legs. ‘It was several months before he was walking normally again,’ says Molly.

Roman is once again playing football although he still loses his balance. There are other consequences, as Molly explains: ‘If a situation becomes overwhelming, it’s as if his brain stops processing things. He can be impulsive – running out into the road, for instance – and sometimes he can’t remember where he’s been and what he’s done.’

He also developed post-traumatic stress disorder from waking up during the lumbar puncture and is still terrified of medical staff and treatments.

Molly says: ‘Looking back, I was naive about chickenpox. Now I know the complications, getting your child vaccinated could prevent another family suffering.’

For more information, go to encephalitis.info.