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Published 16:46 1 Feb 2022 GMT
Updated 16:54 1 Feb 2022 GMT
"Because of the brain stem compression, the signals are all incorrect. The brain stem subconsciously controls everything.
"Her heart rate can go from 60 to 140 in the click of a finger. The signals are getting confused."
Guy said his wife has no "quality of life" now and is just gasping for breath.
Ideally, he said, Rachel needs non-invasive therapy for her breathing but it is complicated.
"She is suffering from central apnoea's during the day too - sometimes she just stops breathing for a moment.
"She is in constant agony, it is relentless. I genuinely can't remember her having a good day since she had her first surgery.
"It has left me feeling heartbroken and helpless. The surgeries are high risk, but without them Rachel will die."
After receiving £45,000 in donations from well-wishers, the family is looking at different options to help save Rachel’s life, but is still short of their £350,000 target. As of Tuesday afternoon, they had raised just over £48,000.
One option for the family is a complex operation in New York by Dr Paolo Bolognese - the only surgeon in the world prepared to do the procedure.
Guy said that even though the family is continuing to explore their options, travelling abroad could be fraught with difficulty. They will need an Air Ambulance to get there.
The quality inspector said: "The changes in the air pressure and altitude, and she may need oxygen. It could affect her in a dangerous way. We will need medical supervision throughout.
"With that, there is no guarantee that Rachel will survive the surgery - but then again, she might not survive without the surgery."
Guy said the family is not "fooling ourselves that this will be the fairy tale ending".
"We have to prepare ourselves for the worst in surgery, if we get there."
And time is running out: "It is a race against time now, I don't like to think about it but the longer she is like this, without treatment, the worse she is going to get - she will die."
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