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I had the perfect boyfriend I was meant to be going to America for the
entire summer to go and work and I was getting first's at uni.
I'd just finished my GCSE's when I got it
[Screams and laughter]
Like a few weeks before I got else so managed to get my degree, luckily, even I don't remember doing it.
There's no warning, nothing, if it is going to happen, it's going to happen.
It doesn't matter. I don't think age, sex, you know, nationality, nothing matters.
Encephalitis is a devastating condition it robs people of their lives we call it
a thief because it just takes so much from families, from the individual
themselves.
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I was 39 years old I was a successful businessman and I believed I was
indestructible and then suddenly I was struck by encephalitis and I was
left with the the wreckage afterwards.
It's just medieval I mean you, you just think well there must be something that can that can cure this.
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I was due to go on a combination of a business trip and a holiday. Started
getting very fluey symptoms. I was having seizures. Very quickly I flew straight into a coma.
The causes of encephalitis can be just as simple and straightforward as
getting the flu, having a cold can cause it. Simply as the cold sore virus, it can
be chicken pox, it can be tonsillitis. Really you know, every day, common viruses
that everybody picks up and then for some reason in some people it goes and attacks the brain.
Where she was in and out of consciousness and fitting and one
minute she'd be, she'd be, she'd be up, she'd be doing things but not as our
daughter would. She'd be like a crazed girl. Personality changed totally.
It's, it's so hard to detect and this is one of the key problems with encephalitis, it's almost
untraceable and so diagnosis is, is so key.
Eight out of ten people that don't have treatment with this condition die. With treatment
still three in ten people can die.
As soon as they turn around and sign the discharge papers at hospital you completely left on your own.
The wreckage of encephalitis is that I was left with an acquired brain injury. That isn't
something that can be healed once the damage is done to your brain, it's permanent.
She didn't remember us so it's all that rebuilding everything.
She didn't know I was her mother. She didn't know her dad, she didn't know her brother, sister.
Absolutely, nothing was the same. [She wasn't our daughter, she was a different girl]
Because people always say you need to make the most of what you've got, don't they.
But it's like how do you make the most of something when you're missing everything that you used to be.
You're not the same person anymore.
My desk was in the corner of an open plan office and I would hide behind my
computer screen but because I looked well and I looked healthy everyone just
assumed I was okay and I had to ask them what do I do?
You're still obviously lucky cause like all of us can walk and we can talk and then
there's other people, they haven't been that lucky.
The day before he was struck down, he went to London to get his ticket for his gap year with his friend.
On the Saturday morning his friend rang up and said that he had
difficulty waking up Johnny that he took him off to hospital. They sent him
quite quickly up to the acute medical ward but they were almost in the dark as we were
and by the Wednesday he died.
We got hold of the one and only encephalitis society.
They were incredibly understanding and helpful because you know we would have been floundering around.
It is the only resource of its kind in the world and they are working
incredibly hard to transform people's lives
through the help and support that they've given to medical professionals
but also to people affected by encephalitis.
The family weekend basically is a chance for families to come together in a safe environment that have been
affected in someway by encephalitis. There's a whole range of people coming
together really just to kind of feel that they're not alone they're not
isolated and then have fun!
If the Encephalitis Society didn't exist
I wouldn't feel as supported in my everyday life and I wouldn't have met these two lovely people.
It's like a safety net underneath you. You know you've got
someone to fall back on to that's gonna stand there and catch you if you need to
shout or scream or vent.
I've created a garden in Johnny's memory and all his friends wanted to sort of
talk about him and remember him and it's a nicer place to be than standing by the
by the grave and I bought this statue of a Merlin, which I thought was quite a
good sort of symbol of Johnny. Just because it's in full flight and sort of
full of life.
Even though we're based here in the UK we never turn anybody away that that's
gone through the experience of encephalitis. That's why we're so important
and and you know one day we'll have offices all over the world so that we
can help everybody.
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