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'I just don’t want to die': woman needs £200k for life-saving operation to stop her skull from crushing her brain stem

A young woman from Worcestershire says she will probably die - and soon - if she can't raise two hundred thousand pounds for an operation.

Antonia Payne-Cheney, who is from Eckington, has a rare hereditary condition that means the weight of her skull is crushing her brain stem.

The twenty-year-old has Ehler's Danloss-Syndrome, a rare connective tissue disorder that's wrecked virtually every bodily function and made a full time nurse out of Mum Victoria.

Antonia's mother Victoria has to nurse her bedridden daughter who's been robbed of nearly all her bodily functions Credit: ITV Central

Once a healthy, active teenager, at twenty, bedridden and fed through a tube, the syndrome has already robbed Antonia of a lot of life.

But a procedure now available in Spain could fix perhaps its most serious complication.

The ligaments in her neck are no longer strong enough to support her skull and it is pressing down on her brain stem, worsening many of her symptoms.

The operation involves playing titanium rods in Antonia's neck to reposition her skull Credit: ITV Central

The surgeon will lift her skull into the correct position, and then fix it in place with a titanium rod. But he says it needs to be done now, and it's going to cost £200,000.

Antonia’s mother says focusing on the chance of the treatment, is keeping their family going. The family have set up an online fundraising page which has so far raised £55,000.

Victoria Cheney speaking to ITV News Central Credit: ITV Central

"It's the only way forward now really. It's the thing that gives us all hope, it gives Antonia hope, but also because we've been told by an expert that it could make such a huge difference to her quality of life.

Somebody who understands her condition, Ehler's Danloss syndrome, and the other complications that go along with it".

– Victoria Cheney

Yet despite an adolescence filled with sickness and pain, Antonia remains positive about her future, and wants to live her life to the fullest extent she can.

"I've been told so many times that I'm not going to survive. I've had sepsis so many times and they've told me 'this is going to kill you'. And it doesn't. And I fight it. So I don't think anything's impossible."

– Antonia Payne-Cheney