A GOOSTREY woman who suffers from a rare condition meaning she cannot move her neck without it dislocating is raising funds for a life-changing operation.

Louise Cuppello, 28 and mum to five-year-old Charlie, suffers from Hypermobility Elhers Danlos Syndrome (hEDS), which has caused Atlantoaxial Instability (AAI) – a dislocated and unstable spine.

Louise, who was also diagnosed with rare brain condition Chiari Malformation, now lives in a neck brace and requires a series of complex specialist operations, which is not offered by the NHS and – combined with recovery treatment – could cost up to £150,000 as far afield as the USA.

She said: “I have always been really independent, working two jobs and – as former flight crew – every hour under the sun, as well as bringing Charlie up full-time.

“To go from that to losing it all and losing the job I loved is the hardest thing for me.”

Having suffered from severe headaches, heart and breathing problems, dizziness and nausea prior to her diagnosis, Louise says that while the diagnosis was ‘scary’, it helped pin down to problem and focus on the road ahead.

Engaged to pilot fiancé Alex Alcock, and mum to five-year-old Charlie, Louise was initially told there was nothing wrong bar a case of anxiety, leading the family to pay privately for scans.

She said: “The doctor kept telling me there was nothing wrong and did the neurosurgeons. I ended up paying privately for an MRI and it showed what was happening. My spine was dislocating every time I moved my head. It was pinching my blood vessels every time I moved my head.

“I was actually so relieved to be honest. The GPs and top, top neurosurgeons were telling me I needed to see a psychiatrist. I knew there was something wrong, but they said it was anxiety and things like that.

“I pushed and pushed and was getting worse and worse, everything was going downhill but didn’t know why.

“I was just so relieved to know what was happening. It was obviously really scary, but I know if I got the surgery I could be fit and fine within a year. That gives me hope, and I had lost hope.”

Untreated, the condition will worsen and could lead to paralysis or death. Only one surgeon in Europe can perform the operation, but says that Louise is a particularly complex case and the family is subsequently speaking to two doctors in America.

For the time being, Louise remains in high spirits and says the support of her family is helping her along.

She said: “No two days are the same, and it’s also an invisible condition.

“Charlie is really good. Alex is in most mornings and can help me do the school run and pick up. When he isn’t here I struggle but Charlie is lovely and caring to me.

“When I need to lie down and rest to alleviate the pressure on my spine he will come up and offer me a drink or a pillow or a cuddle. He doesn’t full understand, but he just knows that mummy is having a bad day.”

Click here to see Louise's fundraiser.