Update 9th May

So, I went to todays appointment with a very kind and knowledgeable U.K. neurosurgeon, not expecting miracles…. but, the appointment brought more heartbreakingly tough conversations, and yet again more doors closed for me….

I think I need a little time to process it and get my head around what feels like constant doors being slammed shut in my face, time and time again.

It’s never easy easy being told you’re the only person in such an impossibly difficult situation. Stuck in a halo indefinitely, to keep me alive and breathing, with nobody in the U.K. able to help surgically.

“Hope is the only thing stronger than fear”

I know I’ve been quiet as I don’t like sharing bad news…. And there’s been a multitude of it recently, but I will update you all as soon as I can, I just need a little time to find the positives again… watch this space, I’ll be back soon!

In the meantime I’m off to whinge about my ankle which I dislocated today! ?…?


? https://www.paypal.me/melaniesMission2Live
? https://www.gofundme.com/f/melaniesmissiontolive2021
? http://www.melanies-mission-eds.org.uk/donate-now/

About Melanie

PLEASE DONATE NOW to #MelaniesMissionToLive - a charitable trust fund created to fund specialised medical transport and world specialist, life-saving spinal and brain surgery for Mel (a 32yr old Newcastle University biology graduate from Cramlington, Northumberland) before its too late!! Due to Mel's complex underlying conditions (EDS and CCI) her only option for revision surgery to fix her broken fusion is to seek help abroad! WE NEED YOUR HELP

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