A British mum who suffers from a rare condition which could “internally decapitate” her at any moment will be driven 1,000 miles on her back for life-saving treatment. Rachel Pighills, 35, had been moving into a new house when she struck her head on a ceiling fan when she stood on a bed, leaving her with horrific injuries, in August 2018.
She was diagnosed 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. It means she can no longer turn her head the wrong way as each time she does her spine partially dislocates, increasing her risk of paralysis or death.
The precarious position of his wife's health has made her husband Guy feel "heartbroken and helpless" as the couple desperately hunt for treatments. The couple were given a glimmer of hope when Dr Paolo Bolognese offered to operate on her in New York.
But doctors dealt Rachel a hammer blow when they said it was too risky for her to travel by plane for the life-saving op. Husband Guy, 41, is now planning to drive his wife 1,000 miles from their home in Worcester to Barcelona after another surgeon offered to help. The couple are planning to buy an old ambulance so Rachel can lie flat on her back for the entire journey to minimise the risk of her suffering further injuries.
Guy, a quality inspector, said: “The risk is too great, and flying could cause more harm. To get to Barcelona, we’re thinking of hiring or buying an old ambulance and I’ll drive it myself. Driving an old ambulance is the best option. I know how severe it is for Rachel, even a bump in the road could be very serious for her. I would feel a bit more confident if I was driving.”
In January 2020, Rachel underwent Occipital Spinal Fusion surgery in the UK which was hoped would improve her quality of life. 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.
Sadly, the surgery did not help, and complex tests later showed results of brainstem deficit and rapid deterioration of the function of critical areas. Without brain and spinal surgeries, these could shut down completely at any time, leading to brainstem death.
Neurosurgeon Dr Vicenc Gilete has offered to carry out the latest complicated three-stage operation at his private clinic in Barcelona on May 20. The procedure would involve realigning Rachel’s spine and neck as surgeons attempted in 2020.
After being told Rachel is too frail to travel by plane to Barcelona, the couple are planning to make the 1,000-mile journey by road. They say the mammoth road trip will take six days to complete as Guy will have to drive at slow speeds to avoid Rachel suffering further injuries.
Guy will drive from Worcester to Dover and catch the ferry to Calais and travel the entire length of France before finally crossing into northern Spain. After receiving £74,000 in donations from well-wishers, the family are still short of their £212,000 target to cover the cost of the surgery and travel expenses.
Rachel said: “I can’t say I’m confident because there is such a long way to go. If 28,000 people donate £5 then we have our target. If I don’t get the surgery by the end of May, the more chances are that the damage will be permanent. People have been doing wonderful things such as holiday events, bingo nights and we’ve met some wonderful people on this journey.”
The couple have set up a GoFundMe page to help raise cash for Rachel’s operation. To donate, visit: https://www.gofundme.com/f/q8tc99-rachels-fight-for-life
