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Young woman's daily ‘battle for survival’ with condition that could kill at any moment

Ali in her neck brace Photo: MEN syndication

The boyfriend of a Bury woman living with a condition that could paralyse or kill her at any moment, has made an emotional plea for help funding surgery to save her life.

Alison Turner, known to family and friends as Ali, suffers from a complex neurological condition involving her skull and the second vertebrae in her spine, and risks dislocating her neck on a daily basis.

The 32-year-old’s partner of five years, Nick Zabel, also 32, says each day is a ‘battle for survival’, and that Ali has been left unable to carry out even the simplest household task.

He explained that Ali, who lives with him in Tottington wears a specialised neck brace 70 per cent of the time, and was forced to give up the job she loved working with vulnerable children and families for Bolton Council due to ill health.

Nick and Ali Credit: MEN Syndication

Despite her zest for life, Ali has been plagued by illness from a young age, with gastrointestinal issues along with many joint dislocations.

After seven years of invasive tests with no firm answers, she was finally diagnosed with two debilitating conditions – Ehlers-Danlos Syndrome type 3, which makes you more prone to dislocation, and Postural Orthostatic Tachycardia Syndrome, an abnormal increase of heart rate.

Both cause her an endless list of problems, including the inability to regulate body temperature, severe nausea, palpitations, insomnia and tremors.

Nick says over the past 18 months, Ali has become a shadow of her former self, suffering from hideous headaches, frightful facial pain and fatigue which has at times left her bedbound for days.

Stroke like symptoms and muscle wastage mean she is too weak to perform the simplest of daily tasks.

Then, to make things worse, an upright MRI scan then revealed she had a complex neurological condition, causing increased pressure on her brainstem, which alongside Ehlers-Danlos, puts her at risk of dislocating her neck, or even death.

Ali needs life-saving surgery, but it is not available in the UK so instead she and Nick have turned to a hospital in Barcelona, Spain, to carry out the procedure.

This is expected to cost around £55,000, and a fundraising page has been set up to help them reach their target.

So far, more than £9,000 has been raised, but there’s still a long way to go, and they are hoping Ali will be able to undergo the operation in the spring.

“Everyday Alison is in debilitating and unimaginable pain, her symptoms are affecting every bodily function.

“This is devastating for her family and those closest to her who are witness to this rapid decline.

“Most tragically unlike many women her age, at present Ali is unable to start the family she longs for, due to her untreated and ongoing medical difficulties, this breaks her heart on a daily basis.

“We would be eternally grateful for donations or fundraising events you could host to enable Ali to get some quality of life back.”

– Ali's boyfriend Nick