DIZZINESS, migraines, muscle pain, IBS, allergies, iron deficiency, vertigo, tendonitis - for more than three decades Jessica Kill’s life was reduced to an endless series of baffling symptoms, punctuated by crippling aches and unexplained infirmity.

Until, after a lifetime in the dark, a specialist connected the dots, finally putting a name to the rare condition responsible for more than 35 years of agony and self-doubt – Ehlers-Danlos syndrome.

Her relief was short-lived. The countdown had already begun: she had just three months to find £150,000 for critical surgery abroad or face spending the rest of life paralysed.

“I was numb emotionally and mentally,” confides the 38-year-old, originally from Cricklade. “It was a horrendous situation; nothing can be done in the UK or Europe but there is this surgery in America that costs £150,000. You don’t have a choice you have to try. If there was nothing that could be done, I would accept it, I’d have to. But something can be done so I can’t be resigned to my fate.”

EDS is a genetic connective tissue disorder which occurs in childhood or young adulthood and affects one in 5,000 people. Sufferers have stretchy skin that tears easily, hypermobile joints and fragile blood vessels. For some the condition is relatively mild, while for others the symptoms can be disabling.

Neither Jessica not her family can recall a time when she was not blighted by joint pain. As a toddler she seemed more sensitive than most, complaining of discomfort in her legs, all dismissed as ‘growing pains’ at the time. But her health took a turn for the worse out of the blue in her 20s. It began benignly enough, with severe but not worrisome gastric problems. She was diagnosed with IBS. The list of her ailments grew alarmingly over the next decade but she was assured by doctors, all the issues were unconnected; it was sheer bad luck.

She took each new diagnosis in her stride, determined to carry on as usual. Yet she could not shake the feeling she was somehow at fault, overly susceptible to pain and far too delicate for her own good.

“Nobody could join the dots,” adds Jessica, who now lives in Birmingham with her sons Louis, 16, and Finley, eight. “I used to have this dream that someday I would find this magic cure and find out what was really wrong with me and that everything would be okay. But whatever new pain I felt, it was always put down to something they had already discovered. It just got to the point where I thought, my body is just a bit rubbish. But mentally I found it quite difficult. I was told there was nothing seriously wrong and I thought it must all be in my head. I was a single mum, I had to keep going to earn money and look after my sons.”

Her health deteriorated progressively, until in 2013, she started suffering from tendonitis and bursitis - both inflammations of the soft tissue around the muscles and bones. Doctors were initially at a loss to explain how she could have injured herself so seriously sitting at a desk most of the time. Eventually she had another firm diagnosis to add to her bulky medical records: joint hypermobility syndrome.

“They told me nothing could be done and I was really depressed at that point,” admits the former project manager for the National Trust. “I was able to do less and less. I couldn’t go for bike rides with my sons, do active things the way I wanted to. Things went downhill very quickly.”

She had lost all hopes of uncovering the underlying cause of all her ailments, when her osteopath fortuitously mentioned Ehlers-Danlos Syndrome suggesting she consult a specialist in London.

In June 2014, she was diagnosed with the largely unknown and incurable condition.

“It was a lightbulb moment,” recalls Jessica. “But I had mixed feelings. He told me straight away it was incurable. Nobody was going to come along and say, ‘You’ll be treated and you’ll get better.’ It’s a life-altering condition.”

She muddled along at the mercy of her weakening body. Partly dislocated wrists and shoulders became a weekly if not daily occurrence brought on by only the faintest of movements.

Her health took a turn for the worst in early 2015, when she was plagued by blinding headaches, unusually persistent pain in her neck and shoulders, vertigo and numbness. Barely able to stand on or speak intelligibly, she knew something was deeply wrong.

After being rushed to A&E with a suspected stroke and released none the wiser in January this year, she decided to take matters in her own hands. She recalled a recent TV appeal by fellow EDS patient, Nina Parsons, to fund vital surgery in the United States and treat craniocervical instability, a complication of EDS which sees the skull crushing the neck and leads to eventual paralysis.

As her own neck pain grew unbearable, Jessica became convinced she suffered from the same complication. She contacted Nina and on her advice booked herself in for a private upright MRI.

“I walked like a drunkard. One day my speech just went. It was a scary time. I had been sent home from hospital but I was not well enough to go back to work. I had to get to the bottom of it.”

The scan confirmed she had been right along. The only way to avert impending paralysis was a pioneering operation only available in the USA. To avoid any irreparable damage, she was warned, the surgery had to be performed within the next three months. This was nearly two months ago.

“I really didn’t want to be right,” she explains dolefully. “But in my gut I just knew. If I don’t get surgery I will need help breathing, eating and have to sleep with a machine – it is terrifying.”

The complex neurosurgery called Posterior Fossa Decompression has a 95 per cent rate and involves taking pressure off the brain stem by fusing the neck and skull to prevent paralysis.

Unable to fund the operation herself, Jessica launched a nationwide appeal last month calling on the kindness of strangers to allow her to “get fixed” and continue to be the dependable and devoted mother her sons deserve.

She has raised an impressive £44,000 so far and the sum is rising steadily each week.

Despite the public’s overwhelming support, she refuses to raise her hopes up just yet.

“I’m managing my expectations,” she says, her voice trailing off. “It’s a difficult mental journey. When you’re in this situation there’s no guarantee. It’s awful to have to fundraise and ask people to donate. You feel so guilty. Sometimes it would be so easy to give up. But I get my strength from my boys; I want to be there for them. That’s why I keep fighting. And If I’m lucky enough to get fixed, I’m not going to let this go. I will be back fighting for other people.”

To donate to Jessica go to www.youcaring.com/jessica-kill-559740 or www.teamjess.co.uk.