Ben's Story
Ben was an extremely healthy and fit 11 year old when he contracted viral encephalitis in July 2004. It
started within 24 hours of our arrival on a three week holiday in Australia. His initial symptoms were
violent headaches and acute vomiting. We called a doctor but before he had arrived, Ben had become
confused and was in terrible pain and we had rung for an ambulance. The ambulance men were concerned
when Ben was unable to remember his name or where he was. He was admitted to a private hospital in
Brisbane and within 15 minutes of his arrival, had a spinal tap, which showed an abnormally high white
blood count and protein levels. The doctor suspected meningitis and immediately gave him Acyclovir by
drip – we believe this prompt action probably saved his life.
He was transferred to a ward at Brisbane Children’s Hospital later that day, under the care of the wonderful
Professor Pearn, Head of Paediatrics. Unfortunately the following day the acute head pain returned with
a vengeance and he was once again moved to the emergency department where he was given injections
of morphine and other painkillers all of which his body rejected by being violently sick. He had an EEG,
which showed abnormal and erratic brain patterns followed by a brain scan and he was then given a
general anaesthetic and had an MRI scan. He was treated jointly by the Head of Neurology, Head of
Emergency Services and Professor Pearn who were all baffled by his condition although they knew it was
a strain of viral encephalitis, possibly Japanese. The next week was a roller coaster of Ben seeming to
make some recovery and the slipping back. However after two weeks he was discharged from hospital
and although weak continued his holiday.
On arriving safely back home he slowly recovered and gained strength back. We were grateful for the
support of the Encephalitis Society in the form of advice and help with behavioural and memory problems.
He currently plays tennis at good club level for about ten hours a week and will be taking some GCSE’s
next year. He occasionally feels lightheaded, struggles to concentrate in class and his short term memory
is not brilliant BUT we know how lucky we are to have regained our very special son.
Jane (Ben’s Mum)
Rhys Jones
My son Rhys was born in June 1994, and he had lots of health problems. Following some investigations when he was
two, he picked up a virus which developed into encephalitis, he was so sick, but kept hanging on. I couldn’t bear to
not be by Rhys’ side. I kept thinking that he would be so frightened if he woke up and I wasn’t there. I kept praying
over and over that he would wake up and that he would be alright. It was like we were living in a really bad dream.
Then one night he called my name. I have never been so relieved or overjoyed at hearing him call my name. As the
days went by, he was trying to sit up and started talking a lot more. It was as if he had suffered a stroke for there was
no movement down his left side. Until he saw a balloon that someone had bought him, I was not totally convinced
that he could see either. He kept repeating things that had been said ten minutes earlier and saying the same things
over and over. Gradually he started moving his left eye more as it had been wide open and just staring in one direction.
Rhys was given another brain scan and we were told that there had been bleeding around the brain. The neurologist explained
that the bleeding had occurred because of the infection and that Rhys was at a high risk of having fits. We were also told that
it was possible that he would have learning difficulties and behavioural problems. The radiologist had said that Rhys was a
hopeless case, but the neurologist told him to go to the ward to see him as he was doing much more than the scan suggested
that he was able. We were told that the scarring on the right side of the brain was permanent and that we would have to
give it time for the brain to heal. At that point, all I cared about was that he was alive. We would deal with the rest of it later.
When Rhys was discharged from hospital on 4th October, we took home a very different little boy to the one who I
had taken in for the biopsy on the 4th September. Although we were so lucky that Rhys had not died, we had still
lost our little boy. He still did not have any movement or feeling down the left side, he was very tearful. He became
upset at the slightest thing. He could not bear to be parted from me and became hysterical if I tried to wash his
hair. If I tried to touch the left side of his head he shrank away from me. His sight was not very good, and he held
his head tilted towards one side. He was scared stiff of going to the toilet, and therefore became very constipated.
He repeated things over and over again, and asked the same questions time and time again. He would often come
to me, put his head on my lap and cry. When I asked him what was wrong, he would just sob, “I don’t know.”
Whenever I would mention these things at hospital appointments, I was told that Rhys was growing up and changing
all the time. So when I said that he was a very different child, the doctors said that I didn’t know what he would have
been like if he had not became ill. But I knew… he wasn’t the same child, no matter what they said. It was only after
joining the Encephalitis Society and attending a meeting in York, that I sat back and thought, no, I am not going
mad, and I am not imagining these things. This has really happened to him, and there are other people out there who
have similar problems. It was not that I was making excuses for him. He really did have these problems. We have
learnt more from the Encephalitis Society with their invaluable handbook and website than we ever have from the
hospital. The meeting in York made us realise more than ever how lucky we are that Rhys has progressed as he has.
Lots of parents will identify with the fact that much of Rhys’ progress has been due to hard work and input on our
behalf. This in itself has not been without problems, as no matter how hard we tried for it not to, it all badly affected our
daughter. Ellen was six when Rhys was ill, and too young to understand fully what had happened to him. How could
she be expected to understand when we adults couldn’t fully comprehend the enormity of it. She has recently said that
she always felt that she was second best to Rhys because so much time has been spent helping him. That is not to say
that she was not given lots of attention too, and we know that she loves Rhys very much. She has admitted that she
did resent all the attention that he had, even though we tried our best to always include her in everything. In desperation
last year, I contacted the Society to ask for help with Ellen and they kindly put her in touch with SIBS (for brothers and
sisters of disabled children and adults www.sibs.org.uk). This went a long way to helping her understand that
because Rhys needed that extra bit of help, it didn’t mean we didn’t love her. It didn’t help that I was
so upset and tired either, and I hope Ellen realises now that she is older, that I just tried my best to get
from day to day in the only way I knew how. No one can plan how they will react to something that turns
your whole world upside down. You simply do your best to sort it. I didn’t always get it right, but I do
know that Rhys’ life would have been very different without all the love and encouragement that he has
received from us all. Most of it is, however down to his sheer guts and determination and his attitude of
never giving up. He strives so hard to be like everyone else and he will keep on trying until he achieves
his goal.
We have been extremely fortunate that apart from the odd one or two teachers, Rhys has had tremendous
support in his school life. We didn’t know if he would be able to attend mainstream school. When I visited
the head teacher of our local Infant school, she said that we would have to take each day as it came, and
if she felt it wasn’t the right thing for him, we would have to reassess the situation. Fortunately with a lot
of love and attention from his teachers, Rhys progressed to the Junior school, and is now in year 11. He
has learning support, but is in the top band within the school. He does struggle, as he still has problems
with his memory, and he has been left with a left side hemiplegia and left field vision defect, and suffers
with absence epilepsy, but he is doing so much better than we ever dreamt possible. The teachers at his
school have been so supportive and we cannot tell them how grateful we are.
The thing that Rhys lacked in his life was the ability to go out unsupervised. He has always loved sport,
but despite encouragement from his PE teachers in school, he never had the confidence to be part of a
mainstream club. He has always tended to play with younger children while on holidays, as he was “too
clumsy”, “not quick enough” for the boys his own age, In March 2008, a school friend asked Rhys if he
would be interested in joining a disability football team. The RCT Tigers was founded in January 2008 to
provided better football opportunities for children with a disability. Stephanie Gillard coaches the club,
and I nominated her for the Encephalitis Society Exceptional Services Award 2009 for the huge difference
that she has made to Rhys’ life.
It was easy to see straight away that Stephanie had a wonderful rapport with the children, who had a wide
range of disabilities. She has endless patience and always takes care to ensure that no one is left on the
sidelines. She is firm but fair, and there is always lots of laughter. The way that she has turned around
the lives of these children is simply amazing. All of the children, and Rhys in particular have gained
confidence and self esteem, and we have seen Rhys become more independent over the past year. Since
joining the Tigers, Rhys has also found a best friend, something that is taken for granted by other people
but as Rhys cannot go out unsupervised due to his sight problems, it is something we never dared hope
for him. Stephanie’s involvement in Rhys’ life has been as important as that of the medical profession. She
has given him the confidence to believe in himself, and had provided the missing link in his rehabilitation.
We are thrilled that the Encephalitis Society agreed to award Stephanie for her efforts.
When Rhys joined the football team, Shelley Jones RCT’s Disability Sports Development Officer also
gave him information about a disability badminton club at Abercynon. Since joining this club, under the
guidance of his coach Peter Egan, Rhys has won many medals representing Wales. Most recently, he won
a silver medal in The Great Britain Special Olympics Men’s Doubles in Leicester with his partner Kevin
Egan.
Stephanie covered the maternity leave of the RCT Disability Sports Development Officer earlier this year,
and during her time in this post, she recommended Rhys to the Federation of Disability Sports Wales
based in Cardiff. She had identified during football training that Rhys was quite fast and she asked the
FDSW to give Rhys a trial. The FDSW has set up an academy based at the NIAC centre in UWIC Cardiff,
with the intention of helping disabled people to reach their full potential in sport and reach the top of the
performance ladder. After his trial, Rhys was told he had the potential to “go all the way.”
Since joining the academy in May this year, Rhys has won a total of 12 medals representing Wales in
athletics that included 8 gold, 1 silver, one bronze and one for setting a national record for his age at the
CP Grand Prix event in Nottingham. He set a national record for his age and disability classification in
the 100m at the DSE Junior championships in Blackpool.
Rhys has also received an Elite Performer award from RCT this summer and was awarded the Golden
Boot trophy for being the RCT Tigers top goal scorer for the 2008/09 season.
Allen and I never thought we would be able to watch Rhys playing football, or any other form of sport
for that matter. We cannot begin to describe how wonderful it was to be able to cheer him on from the
sidelines. Allen said after watching him play in his first Pan Disability Festival that “It is what every father
expects to do for his son, but I never thought it would be possible for Rhys.” When he won his first race
in Blackpool, I have to confess that we both cried. It just all seems so unreal, and we both know that
without Stephanie, it would never have been possible.
When I asked Rhys what it all meant to him, he said, “Steph has given me the opportunity of a lifetime,
and I am very grateful to her. I know that I have to work very hard with the academy, but I absolutely
love it. Through the Tigers, the badminton and the athletics, I have made so many new friends and have
already travelled to lots of different places. I have found a best friend and we are already planning our first
visit to the local pub, and I know that is something both our Mothers thought would never happen!”
We still very much take each day as it comes, and never take anything for granted. Encephalitis is a cruel
illness that changes the lives of everyone connected with the person who has been ill in so many ways.
My parents, without whose love and support we would never have coped, aged at least 10 years over
night, and I am certainly not the same person that I was. I am so lucky that Allen stood by me over the
years and gave me his total love and support as I battled with depression. Our wedding vows in sickness
and in health have certainly been stretched to the limit on many occasions.
For Rhys however, the future is staring to look a bit brighter. Through sport, and with the encouragement
he has received from Stephanie, a whole new world of opportunities has opened up. Not everyone is as
fortunate, we know, but the lesson that we have learnt from Rhys is that you must never give up, and
always try your best.
A very proud Debbie Jones
Vicky's Story
My name is Vic Champion and because you write to us every month with newsletters
and information I thought I’d write and tell our story. Well, we are just
a normal family with five children. In May 2002 my daughter Vicky was a 14 year
old girl full of life going to college, who one day felt very tired and kept sleeping
day and night, no pain just tired. After a couple of days my wife took her to the
doctors who said nothing was wrong with her. But she still slept day and night,
so two days after that we took her to our local hospital who kept Vicky in for a
day to do tests on her. But again said nothing was wrong with her she can go home.
But Vicky still slept, a couple more days passed and we rang for an ambulance because
Vicky was hard to wake. On arrival to our local hospital Vicky was sent straight
to Guys Hospital in London where we were told Vicky was in a coma. After loads of
tests we were told Vicky had ADEM. We were told if Vicky survived she would be a
completely different girl from the one we knew because of the severe brain injury.
Well six weeks later Vicky did wake up, she could not do anything. She did not know
how to eat, drink, talk, walk or anything so she stayed in hospital for three months.
When in the end they told me we could take her home, Vicky still could not do anything.
But with loads of help Vicky did learn to eat and talk and began to walk, it was
like teaching a baby again but we got there. For the family life completely changed,
Vicky became aggressive and would scream a lot, everything scared Vicky; the phone
ringing, any slightest little thing would set Vicky off.
As you can imagine Vicky became very hard work, she had many memory problems caused
by the illness, however with help from the Social Services and other health people
we let Vicky go to a number of brain injury units around the country, but none of
these would accept Vicky because of her behaviour problems. In the end we found
an organisation called Guardian who knew about brain injury, they agreed to take
Vicky and gave 2 to 1 help covering 24 hours a day.
Mental Health wanted to put Vicky in a secure unit but we did not want Vicky in
that place, so Guardian agreed to keep trying with her. We are five years on now
and Vicky is still with Guardian and has come such a long way, Vicky still has many
problems and can never be made better but her life has been made easier for her
to live her way.
As someone said to me, every day is a new day for Vicky because she cannot remember
yesterday. So Vicky will always need 24 hour care and all because one day she just
felt tired, no drugs, no drink, no accident, she just slept.
Vic Champion
Ethan's Story
Ethan was born the 4th September 1999.He was a beautiful baby. He was clever too.
By the time he was two, Ethan could swim fifty metres unaided, sing any song he
had heard once, and bake wonderful cakes! This is no exaggeration. I have the certificates
to prove it. And the photos. And the memories. I never thought all those things
that meant to make you smile later on in life could hurt so much.
On the 19th January, 2003 at the age of 3.5, Ethan fell into a six week coma after
a very high temperature. The night before, I believed he was having those high temperatures
toddlers get. The next day he did tell me his legs felt funny and I told him it
was pins and needles because he had been sitting on them. How these little details
torture me, and will do so for evermore. I took him to hospital when his temperature
reached 106.2 and they sent us home saying it was probably a virus. At two in the
afternoon his temperature dropped to normal, but he was drifting in and out of sleep.
Then at eight he took a deep breath and lost control of his bowels. His fists clenched
and he was grinding his teeth, I screamed. It was on a Sunday night and therefore
no radiologist, no nothing. The private hospital didn’t have an ICU. The paediatrician
got out of bed and said it was a febrile convulsion. I said that those occur when
a temperature is high. Ethan hadn’t had one since two pm.
Dad was away on business. I was hysterical. Two hours later a spinal tap and a brain
scan revealed nothing. The doctor went to bed. But Ethan was still having seizures.
At 3am, I screamed in desperation and the doctors finally agreed to transfer Ethan
to a hospital with an ICU. Meanwhile, Dad had landed at his destination only to
hear my message, then waited in terror at the airport for the next flight back,
five hours later.
After 48 hours of believing that our son had Reyes syndrome, an eventual MRI revealed
widespread brain damage. They did not call it inflammation. During this revelation,
the students and consultants forgot that dad was in the MRI, and that he was hearing
what they were saying. They talked as if he was not there. It was only his outburst
of tears that made them silent. I, Ethan’s mum had not even had the courage
to go into the MRI. That hour was a long one. And I took one look at my husband’s
face and without anyone saying what it was I threw myself on the ground shouting,
“no please no!” over and over.
An hour later the neurologist spoke to us and told to prepare ourselves. She felt
that Ethan’s one chance of survival was to give him a very large dose of steroids.
We had been told only eight hours earlier that such a dose could be lethal. We had
no choice. It saved his life. But Ethan remained in a coma.
During the next six weeks there were many more scares, from heart failure to malnutrition.
As the days went by, I lost hope. There were small improvements but nothing close
to the Ethan that I knew. But I loved him fiercely. I abandoned my other children
and could not leave Ethan’s bedside. I hated myself for not seeing the signs;
why did I say that he had pins and needles for goodness sake!. “Dear God”
I prayed, “please do not punish Ethan for all the wrong that I have ever done”
for I could not believe that God would make such a beautiful innocent child suffer
for no reason.
Gradually, Ethan awoke. His whole body was contorted, his eyes pointed in opposite
directions and he did not respond to me. But by this time I had no hope. I had heard
the words ‘PVS’ (permanent vegetative state and believed our son had
reached it.
Ethan was always a strong willed but loving child. I’m glad to tell you that
he still is. His stubbornness has carried him to where he is now. Two years later,
Ethan is walking albeit not far, not for long and not without a limp. But he is
walking and after a year of not speaking (we had all leant to sign) Ethan spoke!
His speech is clear but slow. We were told that the worst damage was to the brainstem
and that meant that Ethan would always have poor fine and gross motor skills.
But the days are long. There are still a million hospital appointments, and lots
of therapy. There’s a ‘normal’ life to try to get back to, although
that seems like a million miles away. I didn’t see my other children for six
months, and when it was time to leave Great Ormond Street Hospital, I was too scared
to go. I had grown dependent on their love and attention. I never realised just
how difficult disabled people and their carers have it in this world. It seems an
endless battle now that I’m fighting for the rights of a special child. Who
is going to fight for his corner when I am gone? Please God let the world’s
attitudes change before then.
There is nothing more painful in life than to watch the ones you love suffer pain.
Ethan does not remember pain, and so it is my own selfish pain that has caused me
to hide in the dark for so long. Ethan has forgiven, and therefore I too must learn
to forgive. If he can love with life as a special person, then I too must learn
to accept his limitations. What I cannot accept is the world’s limitations.
Thank you to the Encephalitis Society for reaching out to us. There is still so
much to do. Let’s help them to do it. Let’s start by educating the medical
world, so that they can spot Encephalitis before it takes another victim.
Jojo Southwell, Ethan’s mum
Christine's Story
My daughter Christine was almost 20 when she was diagnosed as having herpes simplex
encephalitis. She had felt unwell with flu-like symptoms, then developed a
violent headache followed by a fit. She was admitted to hospital and within
four days was in a coma. She was transferred 30 miles away to the neurological
department of the Queens Medical Centre in Nottingham and nearly died en route.
She then had surgery to relieve pressure on her brain and almost died in the process.
When I saw her in ITU it really was the most traumatic sight. Her long hair
had been shaved off, she was on a ventilator and a heart monitor. She was black
and blue from surgery and tubes seemed to be going in everywhere.
She remained comatose for about three weeks and we never knew what to expect each
day. Her condition wavered from hour to hour and the prognosis was bleak.
She eventually came off the ventilator and started to recognise those closest to
her, although at that stage she couldn't speak. She remained on a high dependency
ward and was transferred back 30 miles after four months. At this point she
could walk with support, speak in a whisper and allowed us to feed her.
It was another ten months till she came home, after much physiotherapy, speech therapy
and psychiatric help. At her worst she had been violent, incontinent and
would eat her clothes, curtains and flowers. She would swear and spit and
had to be put in a single room with just a mattress on the floor for her own safety.
This was a particularly distressing time and I thought this was how she would stay.
But all these things passed and I realise that this was probably part of her recovery,
her anger and frustration at the new person she now was.
When Christine was discharged she was physically well. There is some general
loss of intellect but some things remain unaffected. She can still type at
an amazing speed. Her disability is her impaired memory. Some things
are forgotten in a minute, some things are remembered after days or weeks of repetition.
She has never been out on her own and we are now ten years down the line.
We were offered nothing in the way of support or rehab, so we relocated to our original
home town of Croydon. We went to social services and within two weeks Christine
was going to a day centre, three times a week. Though primarily for physically
disabled people, the staff made great efforts to understand the problems and Christine
was happy to go.
Chris was offered a residential placement at Queen Elizabeth's Foundation for the
Disabled. There she obtained her C and G diploma in word processing and typing,
attended memory groups, OT courses and was regularly assessed by a clinical psychologist.
Then she graduated to Ticehurst in Kent, a lodge in the hospital grounds for five
memory-impaired young people. And now our stroke of luck! Libra Health opened
a residential house for nine people in Bexhill-on-Sea in January 1996. Chris
was offered a place together with some of her friends from the previous two centres.
All nine have memory problems. The staff ratio is one to three, 24 hours a
day. The house buzzes with music and fun, the staff are marvellous and my
daughter now goes to art classes, water aerobics, cooks and cleans (with support).
Now I know that if I die my daughter will be cared for.
Small improvements are still coming but her memory is still severely impaired.
She retains her sense of humour and tries to cover her amnesia as best she can.
I am sad that she will probably never have normal things like marriage and children.
She never complains, even though after a second bout of HSE she lost the sight in
one eye.
Our local authority have funded Christine throughout at enormous expense, but since
Croydon cannot offer the care she needs we had no choice but to look outside the
borough. Never take no for an answer!
Hazel Foley
Last modified: July 2010