Boy, 12, says childhood has been ‘destroyed’ after he contracted chickenpox

A mum has warned parents to ‘think twice’ before deciding not to vaccinate their children after her son was left with lifelong disabilities following chickenpox.

Rebecca Homewood, 49, pleaded with parents not to take the risk of chickenpox lightly after her son’s life was turned upside down after becoming seriously ill.

Rebecca, and her husband Jason, 52, who live near Tunbridge Wells, Kent, described their son Tom as an ‘outgoing’ and ‘effervescent’ boy who enjoyed ‘everything about school life’ before getting ill.

Tom, now 12, was hospitalised just before his sixth birthday after chickenpox after he had a temperature above 42 degrees, a seizure and slurred speech.

Dangers of chickenpox

Tests revealed Tom had developed myasthenia gravis – a condition causing muscle weakness -and inflammation of the brain known as encephalitis as an autoimmune response to the chickenpox virus, varicella zoster.

Just one year later, he contracted chickenpox again.

At first, it appeared to be mild, until he began to experience hallucinations, ‘seeing monsters’ and displaying symptoms of psychosis before he was taken to Evelina London Children’s Hospital for further tests.

Then in October 2019, seven-year-old Tom was diagnosed with encephalitis for a second time, along with a brain lesion.

It left him with many ‘physical, cognitive and mental health difficulties.’

Now Tom requires full-time care and the use of a wheelchair, and he is incontinent.

He also suffers from debilitating mental and physical fatigue and he struggles with depression and anxiety.

As a result, Tom has developed ‘terrifying’ suicidal ideations.

Despite the potentially devastating impact of chickenpox, the vaccine is not currently available to all children.

However, experts have urged the government to expand the vaccination programme to prevent severe cases and hospitalisations.

A vaccination is not just to ‘avoid death,’ but also to ‘avoid disability,’ Rebecca said.

She said: ‘No-one talks about the fact that chickenpox is dangerous.

‘It never occurred to me that my child could get an illness like chickenpox and become so disabled because of the complications that occurred because of encephalitis. It’s something that we just don’t think about, but it’s so prevalent.

‘Parents need to think, when they’re vaccinating children, they’re not just vaccinating for the childhood illness that that child may or may not develop, they’re vaccinating for all those complications.

‘They’re not just vaccinating to avoid death, they’re vaccinating to avoid disability.’

Chickenpox vaccine

Rebecca, who is Tom’s carer but is training to become a counsellor, said he makes their lives ‘whole’ and the parents adore him.

But ‘mourning’ the loss of the child they once had has made her determined to help other parents and raise more awareness.

Chickenpox vaccine

Around 700,000 children under ten have chickenpox each year in the UK, resulting in around 24 cases of chickenpox encephalitis, according to the charity Encephalitis International.

The jab helps protect against chickenpox.

Two doses of the vaccine provide around 98% protection in children and 75% in adults, the NHS says.

But the vaccine is not routinely offered on the NHS.

Chickenpox is usually mild, but it can be serious for pregnant women, babies and those with weakened immune systems such as patients receiving chemotherapy.

It is only offered on the NHS for people in close contact with those at a higher risk of getting seriously ill.

The Joint Committee on Vaccination and Immunisation is calling for the chickenpox vaccine to be added to the NHS childhood immunisation programme.

How to get the chickenpox vaccine

For those not eligible for the NHS chickenpox vaccination, the jab is available privately at pharmacies and drug stores like Boots and Superdrug.

The price per dose at Superdrug and Boots is £75 or two doses for £150 for the full course, but prices may vary between providers.

The jab is given in the upper arm.

Who can get the chickenpox vaccine?

Bookings can be made online for anyone aged nine months and 65.

The vaccination does not help if you have already had chickenpox.

Some people will experience mild side effects such as fever, tiredness or digestion problems, and in some cases mild chickenpox like rash can appear.

Rebecca told PA: ‘I would challenge everybody who is having second thoughts about having their child vaccinated for the MMR, or MMRV as it becomes, to do their research based on scientific evidence before they make a decision not to vaccinate.

‘Lifelong disabilities through illnesses that can be vaccinated against and can be avoided through vaccination are horrific and devastating and make life difficult in ways that people could never imagine.

‘Tom’s childhood has been destroyed, he will never get those years back. His teenage years and his adult life will be very different to the one that we’d imagined for him or he’d even imagined for himself, and a vaccination may have avoided that.’

By speaking up, Rebecca wants to help other families affected by encephalitis not to feel ‘alone’ and spread awareness of the vaccination.

Tom was the last person in his class to get chickenpox aged five.

Initially, Rebecca was not concerned as his symptoms appeared mild – until day three of his illness.

The concerned parents took him to the A&E department at Tunbridge Wells Hospital after his temperature rose to 42 and he had a seizure.

He seemed recovered and he was just about to return to school when he began slurring his speech and his face was ‘completely paralysed.’

While healthcare professionals told Rebecca Tom was OK, she knew instinctively this was not the case.

One year later Tom had to undergo MRIs, lumbar punctures, X-rays and blood tests after contracting chickenpox again, leading to his second autoimmune encephalitis diagnosis in October 2019, aged seven.

But the brain lesion meant he had damage to his brain tissue.

‘Everything about Tom changed’

Despite treatments to reduce the brain inflammation, ‘everything about Tom has changed,’ Rebecca said.

‘It’s grieving the child that you had whilst getting to know the child you now have because everything about Tom has changed,’ she said.

‘I’ve had to become his occupational therapist, his physiotherapist, his teacher, his advocate, his lawyer – absolutely everything.’

He now goes to a special school and his life is filled with medical appointments.

Tom remains under the care of many medical teams including neurology, sleep, physiatry and neurodisability at Evelina London Children’s Hospital and the benign brain tumour clinic at King’s College Hospital.

While ‘elements of Tom’ still shine through, such as his humour and intelligence, he has become very introverted and knows he is ‘different’ to his peers – and he finds it difficult to make friends and interact with others, Rebecca explained.

Symptoms of encephalitis can often remain ‘under the radar’ and can be difficult to identify.

Rebecca said if she had known more about encephalitis and its symptoms, she would not have been ‘so lackadaisical about him catching chickenpox.’

While Tom has regular tests and check-ups and he is currently stable, mum Rebecca does not know ‘what will happen in the future.’

She said: ‘We’ve had to change our expectations for our child, we’ve had to help him manage his own expectations as well.

‘It’s been really challenging doing all of those things whilst still fighting for the right education support, the right health support.

‘It’s a full-time job just trying to keep this child that you love so very dearly, and he’s so very precious to you, alive and safe.’

Despite his daily struggled, Tom is ‘brilliant’ with computers and he enjoys visiting Smiles Sensory and Family Farm, where he can interact with and cuddle animals such as goats and pigs.

Tom also has a dog called Rosie, who has ‘healing powers,’ and helps to make him feel calm.

While it sometimes feels like there is ‘no light at the end of the tunnel’, Rebecca said the support she has received from counselling services, her local community, and charities such as Encephalitis International, has been invaluable.

Dr Ava Easton, chief executive of Encephalitis International, added: ‘Chickenpox is not a harmless childhood disease – it can cause life-changing brain injuries, disabilities, and even death.

‘Although some parents may think it is a good idea to expose their children to chickenpox on purpose so they get the disease – it is important to recognise that chickenpox can be severe, and it’s impossible to tell in advance who will get complications and how severe each case will be.’

For more information on vaccine preventable childhood diseases and their links to encephalitis, along with educational resources, visit encephalitis.info/vaccine-campaign.

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