Three years ago Joshua Brooks’ parents were told he might not make it through the night after the virus that causes chickenpox infected his brain.
Fortunately, the then two-year-old Joshua survived, but since that time his mother Judy and father Martin have faced a constant battle to get the youngster the care he needs, writes Matt Reason.
For most people, catching chickenpox is a routine part of childhood. For Joshua Brooks the apparently mild infection nearly ended his life. The rare but incredibly dangerous complication, known as chickenpox encephalitis, saw the virus infect the then two-year-old’s brain.
But for Joshua, now five-years-old, and his parents, Judy and Martin Brooks, this near-fatal experience was just the start of a long and hard-fought journey.
“It has been battle after battle. It took us until November last year to get a diagnosis actually stating he was suffering the effects of a brain injury,” said Mrs Brooks, a qualified teaching assistant.
“We were not warned or told at all that there could be any lasting effects, we were just so relived that we could take him home, that he was still alive.”
Mr and Mrs Brooks went home completely unprepared for the journey that lay ahead of them. Looking back to three years ago, Mrs Brooks reflected: “The boy we took home that day was not the same child we gave birth to, he has effectively lost the first two years of his life.”
For most parents, chickenpox is an itchy and irritating virus that they know all children will bear at some point. Nearly impossible to catch more than once, the virus causes a rash of itchy spots that eventually crust over and drop off.
Unfortunately for Joshua, the story does not stop there.
“He was two-years-old and just starting to talk, when he caught chickenpox,” Mrs Brooks explained. “We didn’t think much of it, his older brother and sister have both had chickenpox. The chickenpox passed and he seemed to be over it.
“We had a couple of weeks where he was okay and then he got ill, we thought it was just a tummy bug of some kind.”
This seemingly unrelated illness was the first sign that the chickenpox causing virus, varicella-zoster, was still hanging around. Mrs Brooks continued: “He then started getting worse and worse very quickly. He became completely unresponsive.”
Joshua was rushed to West Suffolk Hospital, but his worsening condition meant he was quickly transferred to Addenbrooke’s Hospital in Cambridge.
Despite being told he might not make it through the night, Joshua pulled through, with his parents oblivious to the damage already done.
Now he is still suffering from a range of developmental issues. “He struggles to sleep, he is always changing beds in the middle of the night. He can be up until 10pm, then he’ll try and get into our bed at 3am,” explained Mrs Brooks, who has left her job to be Joshua’s full-time carer.
“The development of speech has been severely affected. We still don’t know whether his speech will ever recover completely. There are so many unknowns with a brain injury like this. He is treated by speech therapists, and recently we managed to get him to see an occupational therapist. We have to fight for every single treatment, for every bit of help we need from the NHS. We changed GPs and in November we got referred to a consultant paediatrician who diagnosed him with the brain injury we knew he had. This opened the door to get the occupational therapist and they have been fantastic.”
Due to his condition, Joshua is not always able to attend school, missing time through appointments and other issues. Despite this, Barnham CofE Primary School, where he attends, has played a big part in helping him and his family. “They have been incredible for us. They are very understanding and supportive,” Mrs Brooks said. “They are really trying to get a handle on where we are at. The school and the teachers try to accommodate him and make the effort.”
Even with the support of the school, Mrs Brooks is all too aware that it may not get any easier for them or Joshua. “There is so much more we are fighting to get for Joshua, sometimes it seems that every day is a battle,” she said.
What is Chickenpox encephalitis?
Chickenpox encephalitis is a rare condition where the virus, varicella-zoster, that causes the common childhood infection, manages to get past the blood/brain barrier and attack the brain.
Chickenpox affects nearly every child in this country and is usually a mild condition causing itchy spots. However, if it manages to pass the thick membrane which usually stops most infections reaching the brain, the resulting inflammation can be deadly. The term encephalitis refers to any infection of the brain and can be caused by several different viruses.
The initial symptoms of encephalitis are often described as flu-like, with a high temperature, headache and joint pain.
More serious symptoms may then develop over the next few hours or days, including changes in mental state, such as confusion, drowsiness or disorientation, seizures and changes in personality and behaviour.
If you or someone you know suffers changes to their mental state as a result of flu-like symptoms, you should dial 999 immediately.
Around 10% of all cases of encephalitis are deadly. The lasting effects can include memory loss, epilepsy, personality changes, concentration problems and fatigue. However, some people experience no lasting symptoms.
Any form of encephalitis is potentially deadly, usually requiring urgent and intensive treatment.
The Encephalitis Society is a charity that supports those suffering from the condition, as well supporting medical research.
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