Cuddles… living like this is hard!

It’s the little things that matter most….

Living like this is HARD… & I’m getting tired. I’m told I’m the only person in the world to have been in a halo for such a long time & it’s not over yet.

I NEED this surgery urgently as my halo is broken and they don’t make any of this type anymore. We are desperate. I’m trying everything I can, I spend 22hrs a day flat on my back in bed to try to minimise strain on the halo.

Im getting worse, the bones in my spine pop out of joint where the broken screws are inside my body. It’s agony, i projectile vomit, my heart rate goes through the roof, I’m in agony….we know without the halo I will die- as I stop breathing, and my only chance is this specialist surgery!

This will stabilise the bones from the front, where the broken screws are, and mean my spine can fuse again, like the rest of it has! But we have little over 7WEEKS to raise the remaining money! Time is running out!

I miss showers, I miss not feeling caged in 24/7 with bars around my head and straps so tight they cause sores! But most of all I miss the cuddles with my niece…. Cuddles in Aunt Mels bed were the norm, she was ALWAYS lay next or me or sat on my knee!

Last week, she asked for the first time in 15months to lay in my bed next to me… and gave me a proper cuddle!

It made my heart so happy, but it’s a sad reminder of how things have changed….. and, a reminder to hold onto hope- how much I have to look forward to when I finally get my surgery and I’m fixed once and for all!

She’s been spending her pocket money on Melanie’s mission pens, raffle tickets and even wants to do a sponsorship of her own for her Aunty Mels operation… and she’s only 9!

If you can help by doing a sponsorship or fundraiser of your own, please get in touch!


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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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