A MUM living in constant fear of death due to a rare condition says she has been overwhelmed by the support from the public as she tries to raise money for life-changing surgery.

Diagnosed with atlantoaxial instability, resulting in excessive movement between the first and second vertebrae of the neck, which holds the skull in place, Rachel Pighills' spine partially dislocates each time she turns her head to the left, increasing her risk of paralysis.

The 33-year-old of Worcester, who has a 12-year-old daughter, is forced to wear a neck brace to guard against the deadly threat of a total dislocation, which would decapitate her internally and kill her.

Now she and her quality inspector husband Guy, 38, are trying to raise £135,000 via GoFundMe to secure help from a surgeon in Barcelona – one of only three in the world able to operate to fuse her neck and skull.

Since her story was shared in the media last week, donations have flooded in, and the total raised so far stands at more than £6,700.

Rachel said: "We are overwhelmed with the kindness and generosity shown by so many wonderful people so far and want to thank them from the bottom of our hearts for their kind support."

Also diagnosed with cervical medullary syndrome, caused by brain stem compression and leading to excruciating headaches, dizziness and fatigue, Rachel, said: “I live in constant fear of paralysis and death. It’s hard to describe that feeling. I feel like I can’t do anything. I go to work for a few hours a day, come home and lie horizontally on the couch. I do not do anything else.

“I’m a determined person and I have to try and do what I can. I know I can’t give up.

"In May 2019 I spoke to a specialist based in Barcelona who said my case is severe and I’m at risk of internal decapitation. Turning to the left causes my cervical spine junction to partially dislocate and I could die instantly if it fully dislocates."

Told in May she has atlantoaxial instability, doctors believe it is caused by a connective tissue disorder, as her collagen quota - the body's most abundant protein and major component of connective tissues - is not as high as it should be.

“My neck has become too unstable to support the weight of my head, meaning I have to take extreme care," Rachel explained. “I can only wear my neck brace for four hours a day, because of the risk of muscles wasting away, which will be even more dangerous.

“I try and avoid turning from side-to-side. I can’t move to the left side.

“But the decapitation risk will go after the surgery, even if there is still some pain. I’m desperate to get to Barcelona and have it done. It might not get rid of all my symptoms, but it will save my life.”

Bizarrely, Rachel was perfectly fit and healthy - running round after her daughter and even enjoying horse riding - until August 2017, when she started taking a new medication for an overactive immune system.

In October 2017, after an MRI scan ruled out a pituitary tumour, Rachel was diagnosed with Addison’s disease, a rare disorder of the adrenal glands where they stop producing enough of the hormones cortisol and aldosterone.

After she struck her head on the back of a ceiling fan while moving into her new home in August 2018, the symptoms started to get worse.

"I started researching myself and came up with postural tachycardia syndrome (PoTS) which is an abnormal increase in heart rate that occurs after sitting up or standing, causing dizziness amongst other things.”

Seeing a private endocrinologist - a specialist treating problems with hormones - in the autumn of 2018, she had an MRI scan, which came back clear.

Further visits to the GP followed and in March 2019, she was referred to a cardiologist, where an electrocardiogram test to check the heart’s rhythm showed she was tachycardic – meaning her heart was beating faster than normal while at rest - and then a tilt table test led to an official diagnosis of PoTS.

Rachel said: “PoTs is a secondary condition and is not caused by Addison’s, so I knew it must have been caused by something else."

And in May 2019, a neurologist also diagnosed her with Chiari malformation, a non-life threatening condition, where the lower part of the brain pushes down into the spinal canal, according to the NHS.

In June 2019 Rachel saw another neurologist, who diagnosed her with platybasia, a flattening of the skull base, and basilar invagination, an infolding of the base of the skull, which occurs when one of the vertebra migrates upwards.

Then paying £1,300 for a private upright MRI scan, Rachel asked for the images be sent to Dr Gilete, a top neurosurgeon she had found via a Facebook group in Barcelona, Spain - one of only three experts worldwide dealing with minimal invasive spinal surgery techniques.

Luckily, a private health policy she has through work has covered a lot of her costs, but Rachel has still spent almost £2,000 of her own money on consultations.

She is now looking to raise £135,000 via GoFundMe to cover an operation in Barcelona and her accommodation for an estimated six week stay while she recovers and transport.

“I will have to have two operations. The first will remove the odontoid bone which is compressing my brain stem and the second a week later will fuse my skull and neck together,” Rachel explained.

“I will have a three week stay in hospital and then three weeks in an apartment with nurses.

“I just want to have it done as soon as possible. No one really knows what's caused it. I still wonder if it's connected to my reaction to the new medication I took for an overactive immune system.

"I feel I have missed out on so much. I can’t go to my daughter’s assemblies and parents' evenings. I tried to go and was walking to a classroom when my legs gave way and I fell into the printer. If I'd banged my head it does not bear thinking about what might have happened.

“I hardly sleep. I can’t go out really. A trip to the supermarket is a day out for us."

To donate visit https://www.gofundme.com/zpefq9-rachel039s-fight-for-life