Nadine Turnbull, from Milton Keynes, suffers from Elhers-Danlos Syndrome (EDS) which means her skull is not properly attached to her neck. Her potentially fatal condition could result in her death from something as simple and innocuous as opening a packet of crisps, or driving over a pothole.
Her partner has launched a fundraising campaign to get her the lifesaving treatment she so desperately needs, and he claims her time is running out. Nadine, who is 38, takes a cocktail of medication every day designed to improve her balance, prevent seizure and make her constant pain manageable. Her partner refers to her on their fundraising page as 'the girl with the wobbly head', and explains that her skull is so loose ‘she risks spinal cord damage and death from internal decapitation’.
The YouCaring page describes what life is life for Nadine: "Because the skull is not supported properly, the weight of it is crushing her brain stem which is the main phone line between the brain and the rest of the body, it regulates life sustaining functions such as breathing, swallowing, heart rate and blood pressure.
Natalie is only millimetres away from dislocation with any excessive movement causing the blood supply to her head to be cut off. Everyday she risks being paralysed due to her spinal cord being squashed by the moving bones, which are normally held in place by the ligaments. Imagine getting in the car to travel to see friends knowing that bumping over a small pothole in the road could cause you to be in hospital for days on morphine for the pain, or even something as simple as your pillow in bed being a little too high could dislocate your head and neck and kill you."
Nadine spoke to the BBC to talk about the dangers of Ehlers-Danlos, and to raise awareness of the rare condition: "My head feels loose all the time. If I get bumped, anything moves too much, it nearly dislocates the head or the neck.
When I look to the left or to the right it completely cuts off the blood supply to my brain. It causes me to have a huge attack where I can sometimes end up in hospital." Nadine and her partner have launched the appeal to raise £110,000 for treatment in the USA as she is unable to be treated in the UK.