#Melanie'sMissionToLive- EDS

£163,338 of £170,000 goal

Raised by 1,654 people in 35 months
Melanie is 28 and a bubbly graduate of the School of Biology at Newcastle University. She lives in Cramlington with her mum Molly.

She suffers from a severe form of Ehlers-Danlos Syndrome, (EDS)‌, which causes all her joints to dislocate - especially those of her spine and neck! This lead to a very severe case of Spinal and now also Cranio-Cervical Instability, (CCI).

This meant her skull and brain are sinking onto her spine, (like a pumpkin on a toothpick), and she needed to fundraise for specialist & life-saving surgery to her neck to fuse the skull to the neck in a matter of a few months!

For over a year Mel was unable to sit up without triggering severe seizures, during which blood oxygen levels drop dangerously low and her blood pressure and pulse skyrocket!

So was forced to spend her days lying down on her bed or stretcher, in a rigid cervical collar at ALL times!

Tremors, nystagmus and episodes of paralysis from the neck down are just some of the symptoms of CCI among many which are even more horrific.

The prognosis for the most severe of CCI cases without the fusion surgery is paralysis & ultimately, death & specialist neurosurgeons have watched "one slight wrong move could cause a full skull dislocation -  resulting in death!"

However, a renowned neurosurgeon in Barcelona, Spain, agreed to take on Mel's complex case saving her life!

Thanks to YOUR HELP Melanie was able to have this lifesaving neurosurgery some 7mnth ago, she had a skull decompression and fusion of skull to. T1 and T10- sacrum/pelvis, to prevent these areas dislocating and putting her life in danger.

Every UK doctor that Mel has seen, (even those specialising in EDS) have said she has extreme joint instability of all joints, and many other EDS related problems from which she suffers!

Now she desperately needs support to fund specialist physio therapy to get her body as strong and stable as possible and help her achieve her full potential!

Are you willing to support #MelaniesMissionToLive?

PLEASE join our
Facebook:  www.facebook.com/melanies.mission.eds

Website:  www.melanies-mission-eds.org.uk

In time, this would help her to achieve her dreams of becoming a teacher, enjoying spending time with Katiya and ultimatley to live her life to the full once again!

Thank you so much for your support!
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Hi everyone, we are now around 7month post op from the neurosurgeries that saved my life- thanks to all of you!

I’m doing really well with recovery although I could be much stronger and further along with it by now!

My physio had hoped to have my muscles strong enough to have me standing up by Christmas!

But unfortunately despite seeing this specialist physio for ten years, after I returned home from Spain the funding was stopped & so I have had no physio support.

As a result my overall condition isn’t great and I recently suffered a nasty dislocation of my right tibia, which is now badly damaged.

Due to this it’s been suggested I open the fundraising again to pay for the ongoing costs of seeing my specialist physio, who knows both myself and my condition very well.

All of my specialist consultants for my condition have stated I’m one of the worst affected they’ve seen and require a specialist physio who has experience of such cases.

I hope you will continue to support my fundraising efforts and help me to get back to being as well and physically able as possible!

Thanks so much for all of your continued support!

Mel x
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Hi all, I just wanted to thank each and every one of you for the phenomenal support and kindness you've all shown me in raising the funds I needed for my lifesaving surgery in Spain.

I'm now over 4months post op and progressing really well! Seizure free, sitting up for around 3hrs and focusing on building my strength up again.... none of this would've been possible without every donation you kindly made!

I'm going to close this gofundme page on Sunday and just wanted to thank you all again for being part of my mission for life saving surgery & giving me a future!

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I'm now home and recovering well!
Check out the link for the latest update on my progress, enjoying spending time doing all the things an Aunty should, with my niece!


Thank you all for the phenomenal support to get my life saving surgery in Spain, you're all incredible!

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Hi everyone!

I'm 3weeks post op from my big spinal fusion today!

Just been to for my last appointment with the amazing Neurosurgeons who saved & transformers my life, in the most incredible way.

I had all my stitches removed (over 50 of them! ) & it's all healing nicely!

It's just a case of reconditioning my body and building muscle back, carefully and slowly over time!

I'm managing to sit for around an hour now before going dizzy from my POTS, that should improve over time and the cooler weather at home will help that too - as it's soooooo warm here! ☀️

Since I can't sit long enough for the flight home we are getting an air ambulance home again, and will work on building up my sitting tolerance more once I'm home- I've not sat more than an hour for 5-6 years..... so my body will take some time to adapt to this new life ahead of me! ✈️

Now to book the flights home!! Can't wait to get home and see Katiya and the dog, missed them crazy amounts & looking forward to being able to have some fun!

Let the good times roll!
Thank you again to everyone who has supported me to get to this point, you're all amazing & the difference in me is incredible!

In the words of Dr Gilete and Dr Oliver, I'm "a new person"!

They said it's incredible seeing the transformation from the very, very poorly person I was 2month ago, unable to move or sit up without having dangerous seizures needing manual traction to literally pop my skull back into joint, to the person I am today- awake, alert, happy and able to sit and move my neck without a neckbrace on & not having seizures!

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£163,338 of £170,000 goal

Raised by 1,654 people in 35 months
Created April 9, 2015
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Neil Robbins
25 days ago

Hope everything gets better for you eventually xx

1 month ago
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