A mother whose son’s childhood has been “destroyed” after he contracted chickenpox, leading to “lifelong disabilities”, is urging parents to think twice before deciding not to vaccinate their children.
Rebecca Homewood, 49, and her husband Jason, 52, who live just outside of Tunbridge Wells, Kent, described their son Tom as an “outgoing” and “effervescent” boy who enjoyed “everything about school life”.
However, three days after contracting chickenpox, just before his sixth birthday, his temperature rose to above 42 degrees, he had a seizure, and he later began slurring his speech.
After undergoing many tests at hospital, Tom was eventually diagnosed with myasthenia gravis – a condition that causes muscle weakness – in April 2018, along with encephalitis, which is inflammation of the brain, as an autoimmune response to the varicella-zoster virus (chickenpox).
Just one year later, Tom contracted chickenpox again, which initially appeared to be mild, but after he started experiencing hallucinations – “seeing monsters” – and displaying symptoms of psychosis, he was referred to Evelina London Children’s Hospital for further investigations.
Tom was then diagnosed with autoimmune encephalitis for a second time in October 2019, aged seven, along with a brain lesion – and 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, he is incontinent, he suffers from debilitating mental and physical fatigue, and he struggles with depression and anxiety and has developed suicidal ideations as a result, which is “terrifying”.
Rebecca, who is Tom’s carer but is training to become a counsellor, 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 for the MMR, or MMRV as it becomes, to do their research based on scientific evidence before they make a decision not to vaccinate,” Rebecca said.
“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.”
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.”
According to the charity Encephalitis International, approximately 700,000 children under 10 years old have chickenpox each year in the UK, resulting in approximately 24 cases of chickenpox encephalitis.
The chickenpox vaccine helps protect against chickenpox but is only available on the NHS to people in close contact with someone who has a higher risk of getting seriously ill from the disease.
For Tom, he 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”.
One year later, Tom contracted chickenpox again and another 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, aged seven.
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”.
Nearly five years on from his second diagnosis, Tom now attends a special school and is still 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.
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”.
“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, and he’s so very precious to you, alive and safe.”
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.
She is now advocating for the vaccination of preventable childhood diseases 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 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.”
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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