This was the final part of our eulogy to Andrew, stolen from us by Rhombencephalitis. I know most of your stories on the website have recovery but not us. The last words he spoke on Sunday 16 December 2018, are to his Dad: 

"Please go home I’m tired."

Monday, he was losing consciousness and transferred to ICU, he never spoke again. He was transferred the next day to a larger hospital where en-route he suffered a cardiac event and had to be shocked back into rhythm. 

Andrew was originally thought to have Guillian Barre syndrome but the lumbar puncture as did the MRI ruled this out. He had several days of plasmapheresis, and dialysis as his kidneys stopped working. He was given high dose steroids and loads of other things like tamilflu, antivirals and antibiotics. We were told from the day of the MRI which wasn’t done until 20 December 2018 as he was so unstable, that day as we were told he more than likely would not recover but we had to give them 28 days to try steroids to see if it had any impact on his body. It only reduced the swelling slightly.

We have been told they’ve not seen a case with such rapid onset and devastating effect on his body before. As a child, he had dyspraxia and dyslexia and borderline Asperger, but at the time he was taken ill, he was in full-time employment and due to be promoted this year.

We consider ourselves the other side of encephalitis in that we didn’t get a try at recovery at all.

I’ve spoken to Jon? I think his name was on your helpline and we did donations in place of flowers to the Encephalitis Society for his funeral. At 26, we never expected to bury him, but sadly this was the case. He went into encephalitis with already five or six of the possible changes you see after (mood etc) but we’d have gladly tried to get our Andrew back one day.

We have pledged to ourselves to tell everyone about what happened and how his life was stolen from us and continue the fight for answers for all types of Encephalitis.

💙Andrew

 

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Means nothing to most, but this was the amount of days Andrew walked this life. Some days were so god damn hard, an uphill battle fighting for him to get what he needed as a child, but it’s a battle I’d walk a million times over even if I knew what would come! 

Encephalitis is rare and some say very rare, more rare than sepsis, only 6000 cases seen across the uk in a year, only 500,000 world wide against 6 million for sepsis.

Six or seven days of cold like symptoms, three of flu and 33 days of the NHS battling to save our son, brother, and uncle.

We will never really know why? Why Andrew? He was a relatively fit and health young adult but it wiped him out, no rhyme no reason. No build up, no signs of what was to come, nothing he did or said pointed to the future that was to come.

Nights without sleep, constant worry, waiting for the phone to ring during the time he spent in ICU, test, tests and more tests! Had he traveled? Where did he go, what did he do? So many questions but never any answers. 

Never any answers! 

Hours we sat at his bedside, holding his hand, talking and talking. Playing music, TV on in the background, always waiting.

Waiting! That’s one thing we could do was wait; for him to respond, recover, react? What would we have given for just that moment, just that time when alarms would stop, when he’d stir and come back to us.

We'd have given anything for that, anything! 

But we had to do the hardest thing ever to say goodbye, we stood and watched as machines fell silent and Andrew slipped away, where to? Who knows? Or why!

As his Mum, I’d have given my life for his, instead I had to watch his life go. No parent should bury their child or sibling bury their younger one but this we had to do today. It was harder than we thought possible but we did.

Our world is shattered, the tears still flow. Yet the world keeps turning like nobody knows. So while we all fall apart like there’s no tomorrow to come, we promise you one thing is; Andrew, that each of us carry on inside our hearts. We will talk of you often, we will speak your name, you will always be with us wherever we go, whatever we do always.

Andrew leaves behind a Mum, Dad, Brother, sister, a sister in law, brother in law and two nephews Kai 10, Harvey, eight, and a niece Maddison, 16 months, who will miss him forever, I hope the society can also share the sad news that this too is what Encephalitis does to families 

 

Karen