Jenny Rowbory, 34, has Ehlers Danlos Syndrome, a connective tissue disorder which causes hyper-flexible joints.
The complications from the condition are so severe, she has been bedridden for 15 years and risks dislocating her skull or snapping a vertebrae in her back out of place if she moves even a milimetre.
Her family is now trying to raise £750,000 to fly her from from Aberangell, Wales, to the U.S. for an operation to try to help.
Ann Rowbory, Jenny’s mum, said: ‘Jenny is in screaming agony 24/7, but unable to scream.
‘Her medical case is highly complex and beyond UK neurosurgeons’ training or experience.
‘Our fundraiser is her only chance to give her a world-class neurosurgeon who is very experienced with severe EDS patients.’
When Jenny moves, it causes a ‘massive crack’, as the vertebrae in her neck pull out of position.
Ann continued: ‘Jenny recently had to go to A&E as vertebra in her neck moved and almost completely obstructed her airway.
‘She stayed in hospital for five days and there was nothing the NHS could do for her.’
In January, Jenny had surgery in the UK to try to correct her craniocervical instability and atlanto-axial instability, which cause her neck to fail to support her spine and her skull to sink in on itself but her parents say she is still unable to move her head off her pillow.
She has been unable to have her hair washed since January as it is too dangerous to touch the back of her head.
Jenny has now deteriorated too much to communicate but a few weeks ago, she tweeted: ‘I need help desperately. I’m so, so tired and weak now.
‘Thank you to everyone who has donated so far. You’ve been so kind and generous. I’m very grateful.
‘There’s still such a long way to go. I don’t want to die.’
Her family want to take her to the U.S. but need the money to pay for Medevac flights, which are the only way to safely transport her, the surgery itself and the intense rehabilitation she will need to recover.
So far, they’ve raised £45,000, in part thanks to stars including Oscar winner Olivia Coleman, Dowton Abbey’s Matthew Goode, comedian Lee Mack and BBC Sport presenter Hugh Ferris, who all joined a fundraising evening which was streamed live on YouTube on November 29.
Ann said: ‘Jenny can’t be left like this. Every second is unbearable and she can’t cope.’
To read more about Jenny’s story, and to donate, please visit her GoFundMe page.
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