Melanie Mission update May 2022


Here is the update you’ve all been waiting for:

So, we’ve established after a year in the halo, I’m still unstable where the broken screws are (at C1 & T1- from the intubation in the U.K.).

Everyone agrees it is simply too dangerous to remove my halo….. but I can’t live in one permanently! This means devastatingly that ultimately without further surgery, I will die, when the halo is no longer a viable option!

Finding a surgical solution has proven a nightmare for me and my neurosurgeon, Dr Gilete. 

Behind the scenes there have been many months of tireless research, and consultations between Dr Gilete and the other top specialists worldwide, in various different neurosurgical techniques, each one being ruled … a NO in my case! 

They feel they are unable to help me and now the ONLY option left is to access the unstable areas anteriorly- from the front! This is a much more complex and difficult procedure!

Now for the positives I promised I’d find!  ?

My amazing neurosurgeon Dr Gilete, never gives up on me… after a year of research, consulting experts and thinking outside the box, he has created the best surgical plan possible. It’s not going to be easy…. but it’s literally the only way left to save my life! 

I’m forever grateful that he has stuck by me since the start, it’s been a rollercoaster of a journey for us both and I wholeheartedly trust he is THE person who knows and understands me and this crazy unique body of mine, best!

I now need to fundraise fast and I need all your help to do this! It’s going to be costly as its a very, very complex surgery, but every little donation, like and share helps!

They’ve told me all my life “Im unique” … but there’s literally nobody else in the world in this terrible situation, with a full spine fusion skull to pelvis, breaks in the fusion causing them to be stuck in a halo, to simply keep them alive and breathing!

In all honestly this surgery is my LAST and ONLY hope, but I HAVE TO TRY! I can’t give up on the life we’ve all worked so hard to build for me, giving up, and letting this be the end of my journey is simply not an option!

The rest of my spine HAS fused well this time with the bone treatments, which is a positive – it’s proof that my bones ARE capable of fusing successfully again… once the unstable areas are stabilised!

So, I HAVE TO be a warrior… be brave and fight for my life once again, for my happy ending- the life I’d glimpsed, before my fusion was broken! 

And I’m hoping for YOUR HELP one last time, to raise these funds… I have too many memories to make with my niece, ambitions to achieve… and my story simply can not be over yet! So I’m counting on you all to help me with this last battle! 

Thank you for all the unending support, I appreciate it more than I’ll ever be able to express. 

Love and hugs, 

Mel ?





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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