A woman who is so crippled by a rare condition she cannot sit up without breaking her spine is seeking to raise £750,000 for a life-saving operation.
Jenny Rowbory, 34, is riddled with complications from Ehlers Danlos Syndrome, a connective tissue disorder which causes hyper-flexible joints.
She has been bedridden for 15 years and due to the issue with her connective tissue her skull can dislocate by itself, and her vertebrae snap out of place.
Her family hope to raise enough money to send Jenny, from Aberangell, Wales, to the United States for surgery, but they need to raise £750,000.
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."
Jenny's parents, who are her carers, described their daughter's condition as so fragile that they had to use scissors to cut her out of her clothes.
She cannot move a millimetre without causing 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.
Her parents say the surgery has left Jenny "more disabled than ever" and unable to move her head off her pillow.
The money raised will help 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.
A host of stars including Oscar winner Olivia Coleman joined a fundraising evening which was streamed live on YouTube on November 29.
She was joined by actor Matthew Goode from Downton Abbey and comedian Lee Mack, and was hosted by BBC Sport presenter Hugh Ferris.
The fundraising total now stands at £45,000.
Ann said: "Jenny can't be left like this. Every second is unbearable and she can't cope."
Jenny has been unable to have her hair washed since January as it is too dangerous to touch the back of her head, Ann wrote on her daughter's GoFundMe page.
"It's awful for her, and we wish we could help her, but we're just left helpless. It's hard not to be able to meet her basic needs because it would kill her," the post continues.
"This is the only option left to us. We need a miracle to be able to raise this kind of money. Any contribution, large or small, we would be eternally grateful for."
Jenny has now deteriorated too much to communicate.
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."
To read more about Jenny's story, and to donate, please visit here.
