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A mother suffering from the "worst known pain in medicine" could be decapitated internally at any time.
Less than a third of victims survive such an injury, which occurs when the spine moves and separates from the base of the skull.
For Amanda McTaggart, this means that she has to wear a neck brace and that she is confined to a wheelchair.
She is now considering a surgical procedure that would cost £ 100,000.
There are only two doctors in the world capable of performing this complex procedure: one in Spain and one in America.
This disease is caused by Ehlers-Danlos syndrome (EDS), a rare genetic disorder of the connective tissue, but it also suffers from trigeminal neuralgia, which causes sudden and severe facial pain described by the NHS as "similar to an electric shock ". in the jaw of the teeth or gums, "according to The Sun.
Shocks can occur hundreds of times a day, making it the most intense pain known in medicine.
Attacks can last from a few seconds to two minutes and occur suddenly.
(Image: gofundme.com)
The cause of the disease is unknown and about one in 1,000 people have it, some for months without attacks before it comes back suddenly.
In order to calm this unbearable pain, Amanda, of Mullaghbawn, Northern Ireland, must take 36 tablets and four injections a day. She was told that she would soon run out of medication.
Although the NHS funds some treatment for EDS, it does so on a case-by-case basis and many of the other exams that Amanda has to attend are not paid.
She is left with the help of a wheelchair and a neck brace to limit the risk of internal decapitation, known as atlanto-axial instability, which could occur with a bad one. movement.
People with the syndrome suffer from fragile and elastic tissues that can make them hypermobile or double-jointed, but also cause persistent pain, chronic fatigue, vertigo and palpitations.
(Image: gofundme.com)
She said, "As a family, it has been absolutely horrible to manage.
"My little boy – Ethan, four years old – was removed from one pillar to the next while I was in hospital or receiving treatment.
"I miss his football, his swimming lessons and even watching him play outside."
She has now launched the GoFundMe call to try to cover medical expenses.
Her health conditions mean that she has a long list of allergies and that she can react at any time, whether in the sun or at the water.
During the last stay at Amanda's hospital, the staff told her that they had not seen anyone suffer in this way for so long.
Although she has received help from the NHS, receiving wheelchairs and walking aids, the cost or reputation of traveling to London for specialist appointments is growing and the possibility of a £ 100,000 transaction is daunting.
Last week, more than 100 donations poured in and she has so far raised £ 3,615, just over £ 1,000 on her £ 5,000 goal.
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