Devastating news

💜Update – devastating news💜

I’m not fixed…. I’ve been pretty quiet recently as I’ve been really poorly with covid & the after effects, I’m still not fully recovered to be honest.

But, it’s time to update you all about my neck. My fusion was broken years ago, and there are broken screws at two levels C1 right up at the top vertebra under the skull, and T1 the (base of the neck- shoulder level).

The screws are broken inside the bone, and my neurosurgeon cannot replace them. I have seizures and stop breathing if the halo isn’t on, or if it comes loose, and the bones are still unstable and popping even in the halo.

Unfortunately my neurosurgeon has tried his very best, and now feels that he can’t do anymore, so advised that I seek advice from America. I appreciate his honesty & everything he has done for me over the years, he is as devastated as me.

In the meantime I have to stay in the halo, to prevent the seizures and respiratory arrests….. & as much as I hate it, it’s the one thing keeping me stable.

Obviously surgery in America will be costly & involve another fundraising campaign… something I never wanted to have to do, but things are desperate now.  So I’m currently seeking advice from America, & will keep you all updated as soon as we have a plan.

Here’s some photos of me trying to embrace my new accessory (the halo) at my cousins wedding.







💜Just Giving:

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 31yr 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 in the USA! WE NEED YOUR HELP

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