Mum’s chicken pox warning after son’s life ‘destroyed’

A mother whose son’s childhood was ‘destroyed’ after he contracted chicken pox twice and subsequently suffered a brain injury which led to ‘lifelong disabilities’ is urging parents to consider twice before deciding not to vaccinate their children. Rebecca Homewood, 49, and her husband Jason, 52, who live just outside Tunbridge Wells, Kent, described their son Tom as an “extreme” and “effervescent” boy who he enjoyed “everything about school life”.

However, three days after contracting chicken pox, just before his sixth birthday, his temperature rose to over 42 degrees, he had a seizure and later began slurring his speech. After undergoing many tests in hospital, Tom was finally diagnosed with myasthenia gravis – a condition that causes muscle weakness – in April 2018, along with encephalitis, which is an inflammation of the brain, as an autoimmune response to the varicella virus -zoster (chicken pox). .

Just a year later, Tom contracted chicken pox again, which initially appeared to be mild, but after he began experiencing hallucinations – “seeing monsters” – and showing symptoms of psychosis, he was sent to the Evelina Children’s Hospital in London for further investigation. Tom was then diagnosed with autoimmune encephalitis for a second time in October 2019, aged seven, along with a brain injury – and this 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, suffers from debilitating mental and physical fatigue and struggles with depression and anxiety and has developed suicidal ideation as a result, which what is “terrifying. “. Rebecca, who is Tom’s carer but is training to become a counsellor, said Tom makes their “lives whole” and she adores him – but “grieving” the loss of the child they once had has led her to help other parents and raise more. awareness.

“I would challenge anyone who is considering vaccinating their child for MMR, or MMRV as it is becoming, to do their research based on the scientific evidence before making the decision not to vaccinate,” said Rebecca for PA Real Life. Lifelong disabilities from both vaccine-preventable and vaccine-preventable diseases are horrific and devastating and make life difficult in ways people could never imagine.

“Tom’s childhood was destroyed, he will never get those years back. His teenage years and his adult life will be very different from what we imagined for him, or even what he imagined for himself, and a vaccination could have prevented that.” She added: “We love him to the core and he makes our lives whole, but it’s like we have two children and we’ve lost one of them.”

According to the charity Encephalitis International, around 700,000 children under 10 get chickenpox every year in the UK, resulting in around 24 cases of chickenpox encephalitis. The varicella vaccine helps protect against chicken pox, but is only available on the NHS to people who are in close contact with someone who is at higher risk of getting the disease seriously.

For Tom, he was the last person in his class to get chickenpox at the age of five, and initially Rebecca wasn’t worried because his symptoms seemed mild. However, on the third day her temperature rose to over 42 degrees and she had a seizure, prompting a visit to the A&E department at Tunbridge Wells Hospital.

Tom appeared to be recovering and was about to return to school, but then he began slurring his speech and later his face became “completely paralyzed”. At the time, Rebecca said health professionals were telling her Tom was fine, but instinctively, she knew that wasn’t the case.

“I kept thinking: In what world is it okay for a child to behave like this?” she said. After undergoing several tests at Tunbridge Wells Hospital, Tom was transferred to Evelina Children’s Hospital in London, where he was diagnosed with myasthenia gravis and autoimmune encephalitis following chickenpox in April 2018, aged six.

After being prescribed medication, Tom went back to school, but Rebecca said his behavior was never the same and he became agitated and anxious. A year later, Tom contracted chicken pox again and another referral to the Evelina Children’s Hospital in London – where Tom underwent an MRI, lumbar puncture, X-rays and blood tests – led to a second diagnosis of autoimmune encephalitis in October 2019, at the age of seven.

This time, however, the family received the news that Tom had a brain injury – damage to brain tissue. Tom received a series of treatments over the following years to reduce brain inflammation – but Rebecca said “everything about Tom changed”.

“I don’t think people talk a lot about the pain when your child becomes so poor that they have such a significant illness,” Rebecca said. It’s grieving the child you had while you know the child you have now, because everything about Tom has changed.

“I had to become his occupational therapist, his physical therapist, his teacher, his advocate, his advocate — absolutely everything.”

Almost five years after his second diagnosis, Tom is now in a special school and is still under the care of many medical teams, including neurology, sleep, physiatry and neurodisability at the Evelina Children’s Hospital in London and the benign brain tumor clinic from King’s College Hospital.

While “elements of Tom” still shine through, such as his humor and intelligence, Rebecca said he has become very introverted and knows he is “different” to his peers – and finds it hard to make friends and interact with others. Rebecca said that if she had known more about encephalitis and its symptoms, which can often go “under the radar” and be hard to spot, she wouldn’t have been “so callous about him getting chicken pox”.

Tom has regular tests and check-ups and is currently “stable” – but Rebecca said she doesn’t know “what’s going to happen in the future”. “We had to change our expectations for our child, we had to help him manage his own expectations,” she said.

“It’s been really challenging to do all these things while fighting for the right educational support, the right health support. It’s a full-time job just trying to keep this child that you love so much and is so precious to you, alive and safe.”

Despite the daily challenges Tom faces, he loves the water and is “great with computers”, and one of his favorite activities is visiting Smiles Sensory and Family Farm, where he can interact with and pet animals such as goats and pigs.

Tom also has a dog named Rosie, who has “healing powers” and helps him feel calm. Although it sometimes feels like “there’s no light at the end of the tunnel”, Rebecca said the support she’s received from counseling services, her local community and charities such as Encephalitis International has been invaluable.

She now advocates for vaccinations against preventable childhood diseases and wants other families affected by encephalitis not to feel “alone”. “No one talks about chicken pox being dangerous,” she said.

“It never occurred to me that my child could get chicken pox and become so disabled because of the complications that arose from the encephalitis. It’s something we just don’t think about, but it’s so prevalent.

“Parents need to think that when they vaccinate children, they are not just vaccinating for the childhood disease that the child may or may not develop, but they are vaccinating for all of these complications. “You don’t just vaccinate to avoid death, you vaccinate 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 damage, disability and even death. Although some parents may think it is a good idea to expose their children to chicken pox on purpose so that they contract the disease – it is important to recognize that chicken pox can be severe and it is impossible to predict who will have complications and how serious each one is. the 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.