Outgoing’ little boy left in a wheelchair, incontinent, ‘seeing monsters’ and battling suicidal thoughts after bout of chickenpox

A DEVASTATED mum claims her son’s childhood has been “destroyed” after he suffered brain damage from catching chickenpox twice.

Rebecca Homewood, 49, said her previously “outgoing” son now suffers from “lifelong disabilities”, as he’s confined to a wheelchair and struggles with depression, anxiety and terrifying thoughts of suicide.

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Rebecca and her husband Jason, 52, of Tunbridge Wells, Kent, described their son Tom as an “outgoing” and “effervescent” boy who enjoyed “everything about school life”.

But all this changed just before Tom’s sixth birthday, when the tot fell ill with chickenpox.

Three days after he contracted that highly contagious varicella-zoster virus, Tom’s temperature rose to above 42 degrees and he had a seizure. The boy later began slurring his speech.

After a slew of tests at hospital, Tom was eventually diagnosed with myasthenia gravis – a condition that causes muscle weakness – in April 2018.

He was also diagnosed with encephalitis, when the brain becomes inflamed as autoimmune response to the chickenpox virus.

Just one year later, Tom contracted chickenpox again, which initially appeared to be mild.

Tom’s childhood has been destroyed, he will never get those years back

Rebecca Homewood

But after he started experiencing hallucinations – “seeing monsters” – and displaying symptoms of psychosis, he diagnosed with autoimmune encephalitis for a second time in October 2019, along with a brain lesion.

This has left him with many “physical, cognitive and mental health difficulties”.

Tom, now 12, requires full-time care and the use of a wheelchair, is incontinent and suffers from debilitating mental and physical fatigue.

He also struggles with depression and anxiety and has developed suicidal thoughts as a result, which is “terrifying”.

Rebecca, who is Tom’s carer, said Tom makes their “lives whole” and they adore him – but “mourning” the loss of the child they once had has made her determined to help other parents and raise more awareness.

“I would challenge everybody who is having second thoughts about having their child vaccinated to do their research based on scientific evidence before they make a decision not to vaccinate,” Rebecca told PA Real Life.

She warned that illnesses that can easily be avoided through vaccination can cause “lifelong disabilities” that 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,” the mum said.

“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.”

She added: “We adore him to absolute pieces and he makes our lives whole, but it feels like we have two children and one of them we lost.”

Chickenpox, known medically as varicella, is an extremely common infection that affects around 90 per cent of children in the UK by the age of 15.

It normally causes an itchy, spotty rash that resolves itself after one or two weeks without needing to see a doctor.

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

Rebecca Homewood

However, in some cases children can suffer serious complications like brain inflammation, pneumonia or bacterial skin infections.

According to the charity Encephalitis International, 700,000 children under 10 years old have chickenpox each year in the UK and about 24 of them develop encephalitis.

The chickenpox vaccine is currently only available on the NHS to people in close contact with someone at higher risk of getting seriously ill from the disease.

But it could be dished out in two doses to children aged 12 and 18 months as part of the UK’s routine jabs programme, subject to approval from the Department of Health and Social Care.

NEVER THE SAME

Tom was the last person in his class to get chickenpox aged five and, initially, Rebecca was not concerned as his symptoms appeared mild.

However, on day three, his temperature rose to above 42 degrees and he had a seizure, prompting a visit to the A&E department at Tunbridge Wells Hospital.

Tom seemed to recover and was just about to return to school but he then began slurring his speech and his face later became “completely paralysed”.

At the time, Rebecca said healthcare professionals were telling her Tom was OK, but instinctively, she knew this was not the case.

“I just kept thinking: in what world is it OK for a child to be behaving in this way?” she said.

After undergoing several tests at Tunbridge Wells Hospital, Tom was transferred to Evelina London Children’s Hospital, where he was diagnosed with myasthenia gravis and autoimmune encephalitis as a result of chickenpox in April 2018, aged six.

Tom was prescribed medication and returned to school again, but Rebecca said his behaviour was never the same and he became agitated and anxious.

One year later, Tom contracted chickenpox again and a referral to Evelina London Children’s Hospital – where Tom underwent MRIs, lumbar punctures, X-rays and blood tests – led to his second autoimmune encephalitis diagnosis in October 2019.

This time, however, the family received the news Tom had a brain lesion – damage to the brain tissue.

Tom was given a number of treatments over the following years to reduce the brain inflammation – but Rebecca said “everything about Tom has changed”.

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

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

UNCERTAIN FUTURE

Nearly five years on from his second diagnosis, Tom now attends a special school and is still in the care of medical teams 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, Rebecca said 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 said if she had known more about encephalitis and its symptoms, which can often remain “under the radar” and be difficult to identify, she would not have been “so lackadaisical about him catching chickenpox”.

Tom has regular tests and check-ups and is currently “stable” – but Rebecca said she does not know “what will happen in the future”.

It never occurred to me that my child could get an illness like chickenpox and become so disabled because of the complications from encephalitis

Rebecca Homewood

“We’ve had to change our expectations for our child, we’ve had to help him manage his own expectations as well,” she said.

“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, alive and safe.”

Despite the daily challenges Tom faces, he loves the water and is “brilliant with computers”.

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.

‘VACCINATE TO AVOID DISABILITY’

The mum is now advocating for the vaccination of preventable childhood diseases – like mumps, measles and rubella – and wants other families affected by encephalitis not to feel “alone”.

“No-one talks about the fact that chickenpox is dangerous,” she said.

“It never occurred to me that my child could get an illness like chickenpox and become so disabled because of the complications from 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.”

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.”

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