A mum is trying to raise £350,000 for life-saving treatment after an accident left her with a rare condition which could "internally decapitate" her at any moment.
Rachel Pighills, 35, is trying to raise funds for pioneering surgery in America which could save her life.
When moving into her new house in 2018, the mum-of-one hit her head on a ceiling fan while stood on the bed.
She was left with atlanto axial instability and basilar invagination - meaning her brain is sinking into her spinal canal and her skull is sliding down onto her neck.
Rachel can no longer turn her head as each time she does her spine partially dislocates, and this increases her risk of paralysis or death.
Doctors said her neck can no longer support the weight of her head and one wrong move could cause total dislocation or "internal decapitation".
Rachel is trying to raise £350,000 for live-saving surgery after a previous operation was unsuccessful.
The operation would be done by Dr Paolo Bolognese in New York - the only surgeon in the world prepared to do the procedure.
Rachel said: "Nothing else will work.
"My only option is to have decompression surgery and the sooner I have that, the better my chance of having a complete reversal of symptoms and full recovery.
"It would mean me leaving my teenage daughter here for school, but she understands how serious this is and how life changing it could be.
“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.
“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.
"We used to walk around castles and English Heritage sites together, now I can’t even make it around the supermarket without a wheelchair.
"I’m a determined person and I have to try and do what I can. I know I can’t give up."
Rachel needs a wheelchair and wears a neck brace for hours a day to stop her neck slipping.
She said she is living in "constant fear" of a stroke or brain-stem death.
Her husband Guy Pighills, 41, said the situation had become "soul destroying" for the couple and their 14-year-old daughter.
The quality inspector said: "Watching my wife suffer and dying before my eyes has left me feeling heartbroken and helpless.
"Rachel is now unable to leave the house unaided and has no quality of life. Rachel is suffering every day and her deterioration is rapid.
"All she wants is her health and independence back, and to stop living in fear of dying and leaving her family behind.
"Most importantly for our daughter to be able to enjoy the rest of her childhood and for us all to be able to enjoy a normal family life again.
“Our daughter constantly worries that she may come home from school one day to find out she’s lost her mum for good, which is having a huge impact on her mentally and emotionally.
“Rachel’s hopes and dreams are like all mums, she wants to watch our daughter grow up and one day be a proud mum at her wedding.
“I desperately need my wife and our daughter needs her mum.
“The thought of our life without her is unbearable.
"The surgeries are high risk, but without them Rachel will die."
Rachel had been fit and healthy up until August 2017 when she started taking new medication for an overactive immune system.
She regularly vomited and lost 38kg in six weeks before being diagnosed with Addison's disease - where the body does not produce enough cortisol and aldosterone hormones.
Debilitating fatigue forced her to move closer to her daughter’s school to cut down her commute.
Moving into her new home was when she struck her head on a ceiling fan, which caused her symptoms to worsen.
Neurologists discovered she had atlantoaxial instability, causing neck movement difficulties; platybasia, a spinal disease; and cervical medullary syndrome, caused by brain compression.
She was also diagnosed with basilar invagination, which occurs when the top of the spine pushes into the base of the skull.
In January last year, Rachel underwent Occipital Spinal Fusion surgery in the UK which was hoped would improve her quality of life.
Guy added: “Her skull was fixed to her spine with rods and screws, and a piece of bone from her skull and spine was removed to create more room for her brain."
He said it was thought the surgery would relieve the compression from her brainstem.
He added: “Sadly this has not been the case, and we eventually learnt that Rachel’s surgery had failed.
“Many complex tests are now showing results of brainstem deficit and rapid deterioration of the function of critical areas, which can shut down completely at any time, leading to brainstem death.
“Rachel needs to undergo a combination of consecutive and very complex brain and spinal surgeries to save her life.
“We have consulted top specialists worldwide, but unfortunately none of them were able to help her until now.
“Time is crucial at this point as Rachel is in respiratory failure and every day more brainstem damage is being caused.
"The quicker Rachel has the revision surgery, the better the chances of a complete reversal of all her symptoms and a full recovery of her brainstem functions.”
To donate to Rachel, click here.
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