Weʼve raised £0 to Help fund specialist equipment for a 13 year old with "locked in syndrome".
- Closed on Saturday, 16th September 2017
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Hello. My name is Miranda. I have just turned 13. I was loving my life, but tragically on April 25 this year - 2017 - I suffered from a very rare form of brain haemorrhage as a result of an arterial dissection in a small vessel in the Circle of Willis. The anterior inferior cerebellar artery.
This caused damage to my brain stem but preserved the upper part of my brain - which is "where we are/who we are".
So I suffer from LIS = locked in syndrome; and I am therefore "still in here!".
I am recovering well and can use my eyes to communicate. I therefore need IT equipment to help me spell, draw (which I love), play Minecraft - and communicate again --- speech is a few months away yet - all being well.
Also I need longer-term --- muscle stimulation and robotics equipment. Happy to be a guinea pig for research - so long as it doesn't involve any more needles!
Big thanks to anybody that wants to help raise funds for theses things - or to any scientist interested in my case ... I'll keep you posted via my website on fb - "Miranda Panda".
My mum is a GP (doctor of 25 years now, so would be happy to discuss the medical details with other medics/neuroscientists interested) --- she knows me very well - so has written this on my behalf.
I've got no idea why my Circle of Willis misbehaved so badly - but then - neither does anybody else? No pre-existing aneurysm even - which is 1 in 100,000 chance of that bursting? My event/insult - is nearer 1 in a million chance of happening. Maybe growth hormone & other hormones surges - yes, I did get all that the past 6 months prior?
Regardless. Here I still am - and still fighting on - ; )
Big thanks - for reading/helping.
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