Bride-to-be who longs to dance at her wedding but risks internal decapitation at any moment needs £50k for brain surgery so she can walk down the aisle

A bride-to-be who longs to dance at her wedding but risks being internally decapitated at any moment is desperate to raise £50k for brain surgery so she can walk down the aisle and be given back her life.

Forced to put plans for her big day on hold, Louise Turner, 36, received the terrifying news last year that she has a combination of conditions that have made her neck muscles too weak to support her head, leaving her wheelchair-bound and unable to leave her house without a neck brace.

Fearing she could die at any minute, Louise, who lives in Ashford, Kent, with her science teacher fiancé Robin McNicoll, 33, and her four children Luis, 18, Sidney, 14, Travis, 10, and Astraea, nine, feels her only hope is surgery available in Spain and is now desperately trying to fund it, saying: “I try not to think about what could happen because it’s terrifying.

“When we first got engaged in April 2019, it was the happiest day of my life.

“We were at an oak tree with a swing, Robin asked to take a photo of me and he asked me how much I loved him. I didn’t know how to respond and he asked if it was enough to marry him. I was euphoric. It was the best feeling.

“It was so romantic. Back then we could have never imagined anything like this happening.

“I want to be able to enjoy my wedding. I don’t want to be screaming and shouting in pain on what should be the best day of my life.

“I used to always dance with my children, but I haven’t been able to in two years and I desperately want to dance with them again on my wedding day, too.

“But we are having to come to terms with the fact we might not have that special day for a very long time, as all our money is going towards surgery.”

Unable to work now, Louise, who was a carer, says her problems began after a minor car accident in December 2019 triggered more than two years of constant and agonising headaches and relentless pain all over her body.

She said: “Over the next few weeks, I started to have headaches and neck pains, but I assumed it was whiplash.”

Sadly, that was the start of a living nightmare for Louise, who had been diagnosed with fibromyalgia, a long-term condition causing pain all over the body, in February 2019, after struggling to cope with stiffness and pain.

Before that growing up, she had always dislocated knees easily and suffered from random aches and pains, but had not thought much of it.

She added: “I dislocated my knee a few times, but I just assumed that was normal. I was told I was double jointed.

“I had random pains that were unexplained when I was younger and I’ve always had migraines, but I didn’t worry about them.”

Despite sometimes feeling like she was “walking through cement” because of muscle stiffness, she put a brave face on things and even enjoyed a trip to Paris later that summer.

But the car crash changed everything for Louise.

And, in January 2020, she started to experience tremors and what she describes as “stroke-like symptoms,” such as slurred speech.

Since then, she has seen numerous specialists, who have given her a variety of different diagnoses.

At one point, it was suspected she had multiple sclerosis (MS) – a condition that can affect the brain and spinal cord.

At others, medics have thought she had everything from severe headaches and migraines to possible Chiari malformation, where the lower part of the brain pushes down into the spinal canal.

In the meantime, Louise says her symptoms have run riot, as she has experienced everything from slurred speech to agonising headaches and a suspected stroke, which led to numerous investigations, including MRI scans.

Feeling increasingly isolated and depressed, for months she was in and out of A&E with a host of related problems until, desperate for help, in January 2021 she saw an otologist – a specialist in ear diseases – who suggested she joined Facebook groups for people with similar symptoms for support.

This was her eureka moment as, through members of a Facebook support group, she was told about a leading expert in her type of symptoms, at the Neuroinstitut in Barcelona, Spain.

After examining her MRI and other scans and speaking to her, in April 2021 he diagnosed craniocervical instability – meaning there is excessive movement between her skull and across most of cervical vertebrae.

He recommended spinal fusion surgery, which uses donor bone to strengthen the spine, and skull base decompression surgery – an operation which involves removing a small section of bone from the base of the skull.

She also had a private consultation in this country, where she was diagnosed with Ehlers-Danlos Syndrome (EDS) – a genetic form of hypermobility.

Deciding to stick with these diagnoses, Louise’s obstacle now is finding the funding to go to Spain, so she can be treated by the surgeon she has so much faith in.

Sadly, with two private operations, air fares and accommodation to pay for while she recovers, she needs £35k for surgery and another £15k for the additional costs.

So, she has launched a GoFundMe page, appealing to kind strangers to help her fund the medical care that she is positive will save her life and eventually see her enjoying the first dance at her wedding.