From Michele: I’m always inspired by those whom I meet on social media. This story really stuck out to me, as I can’t imagine the battles this family has had to face after a sudden diagnosis of encephalitis. So read this story and make sure to scroll to the bottom! Don’t miss the fun facts about Theo!
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22nd February marked World Encephalitis Day. A year ago today I had heard of it but didn’t really understand what it was (tragically my second cousin’s husband had passed away because of it). Fast forward to September 2018 and our world became a living nightmare.
Little Theo’s immune system turned on itself and began making antibodies that shouldn’t be there. It should have just fought off a cough or cold, instead it went into overdrive and started attacking his brain.
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Encephalitis is indiscriminate; it can happen to anyone of any age. Theo’s particular antibody is hard to clear (Anti-MOG) and in his case it attacked his brain first but typically affects the central nervous system (optic nerves, spinal cord & brain).
It started with a seizure and within 24 hours it was clear he was acting very different to his usual self.
My laid back boy became like a feral animal; attacking anyone in his path, trying to escape from doors and windows, biting, screaming. To say we were terrified is an understatement.
Despite the acute onset, it took 2 weeks for him to be started on treatment (by this time he could barely communicate). Even the medical professionals didn’t recognize what was happening! Once the word ‘encephalitis’ was mentioned I was signposted to @the_encephalitis_society_ and my frantic call was greeted by the wonderful, calming Jon from the charity.
He proved to be not only a wealth of knowledge but also incredible emotional support. He really understood what Theo and our family were going through. 5 months on, Theo is doing remarkably well and although he’s not completely his ‘old self’ he’s getting there.
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He’s still on daily high-dose steroids which dampen the immune system to try and stop the antibody. Sadly this affects him physically too and he’s unrecognizable from the ‘slight’ boy he’s always been, however it is saving his life and that is what counts.
Unfortunately there is cure to actually rid his body of the anti-MOG. His immune system is in control here; so the prognosis is unknown.
However we refuse to live in fear. Last week he had a temporary spell of Optic Neuritis in his right eye from inflammation on his optic nerve. In a nutshell he was seeing a white fog in the bottom right of his vision. For a 6 year old this was frightening and he struggled to explain it.
Luckily, knowing the antibody’s normal methods of attack has led us to be vigilant to the symptoms. For more information on Theo’s particular antibody, which falls under the spectrum of Neuromyelitis Optica, you can visit the following website:
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Theo loves reading. His favourites are The Diary of A Wimpy Kid and every Roald Dahl story.
Theo wants to be a scientist and golf player when he’s grown up.
Theo recently enrolled in the Beavers and had his first sleepover in a submarine!
Theo’s Dad is currently training for his second marathon. Theo often joins Daddy for a run but has no plans to complete the whole 26 miles with him quite yet! 😂
Theo is a really big fan of the Queen and hopes to one day allowed to go through the gates of Buckingham Palace to meet her. 🇬🇧
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With Love Always,
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