WHAT can be as bad as 10 hours of spinal surgery? Answer: raising the money for it. What can be even worse than that? Answer: raising more money for more surgery.

Most of us can rely on the NHS, but 35-year-old Leah Boxall has a condition so rare that no doctor in the UK can treat it and the NHS has no funding policy in place for it.

Despite spending hours on the operating table already, she needs more surgery and has just a few weeks to raise the £20,000 to pay for it.

As a child Leah excelled at sports which required a high level of flexibility. But when she was 18, she was told by a surgeon that she had the spine of an 80-year-old. It wasn’t until 2015 that she understood the flexibility she had enjoyed in childhood could prove fatal in adulthood. She was diagnosed with Ehlers-Danlos syndrome (EDS), a rare, inherited condition which she learned she was born with. Her GP warned her: “It’s hard to diagnose, and even harder to treat.”

EDS meant that her spine, with all its associated vital nerve functions, was crumbling. She was in so much pain, she couldn’t even hug her child. But Leah was determined to survive, not least because she had an 11-year-old daughter, Caitlyn, who had been her mum’s carer since the age of nine.

Leah was told she had only a few months to live, and surgery could only be carried out in the US or Spain. So she set about fundraising the £60,000 needed to save her life.

After a few months she had succeeded in raising only £9,000.

“I was losing hope. I didn’t know what else to do. People asked a lot of questions, they were entitled to since I was asking them for money, but I felt vulnerable having to open up my life in great detail when really I just wanted to crawl into a hole. Fundraising when you are poorly does leave you feeling small and helpless. I’ve always been self-sufficient and worked hard for what I want in life but this was out of my control. I felt upset, stressed, hopeful and hopeless all at once. It’s one of the worst experiences I’ve been through.”

Then the charity Acts of Kindness contacted her. They organised a series of fundraising events, her family helped, strangers donated and friends organised a quiz night. And Leah herself spent days on her laptop.

She raised £44,000.

“Everyone did everything they possibly could to help me and there aren’t words for how grateful I am.

"My parents actually sold their house to raise funds for me.”

In April this year, armed with the £60,000, Leah flew to Barcelona where two surgeons operated on her for 10 hours. She woke up afterwards surrounded by her family and realised her head pain was gone. She had suffered from acute head pain constantly for four years.

“The first thing I remember thinking was ‘My headache isn’t there and my eyes don’t hurt’.”

The operation was successful but the surgeons discovered the condition was worse than previously thought. Leah now has no movement in her head and neck, and never will. Due to a few complications, she was readmitted to hospital in Barcelona, pushing the original £60,000 to more than £95,000. Thanks to her parents’ generosity, she was able to meet those bills.

The surgery saved Leah’s life and she could at last hug her daughter again without pain.

But now she is back fundraising one more time. If she is to get out of her wheelchair, take care of her daughter and get back to work, Leah needs another operation, this time on her lower back, to stop the numbness which is spreading across her body.

Previously a horse trainer, Leah knows she can never again work with horses. Such a physical undertaking would be unsafe now that her neck vertebrae have been fused.

“I grieve for my old life, I know I’ll never get it back. But now I want to retrain for a job which I can do without too much physical strain, preferably helping others. I’ve considered becoming a counsellor. I’ve always worked and I don’t know how to do anything else.”

The operation is scheduled for early January in Barcelona. Leah is just £20,000 short of her final target, with only a few weeks to go. She, her family and supporters are keeping their fingers crossed.

Leah says: “To everyone who has been part of my journey so far and helped with events or donated, saying thank you doesn’t seem like it’s enough. To rely on the kindness of family, friends and strangers to help you regain your life is daunting to say the least but I have been very lucky and can never thank people enough.”

l Donate at gofundme.com/leahs-surgery-fund.