A WOMAN needs to raise £200,000 to have life-saving surgery on a rare condition.

Antonia (Tonia) Payne-Cheney, from Eckington, was diagnosed in 2013 aged 14 with Ehlers-Danlos Syndrome, a debilitating and rare condition.

The 20-year-old has now been diagnosed with Cervicomedullary syndrome, meaning her neck is dislocating on movement and as a result she needs to have urgent life saving surgery in Barcelona to stabilise this.

Victoria Chaney, her mother said: "I don’t know whether this is great news or absolutely tragic news.

"It is simultaneously an incredible possibility and potentially the worst news we have ever had.

"Tonia is in unbearable,horrific pain and we are in a desperate situation so on some advice, I took her to London to have an upright MRI scan.

"The professor in radiology was so worried by the results that he sent her scans to a neuro and spinal surgeon in Barcelona who is an expert in this field.

"The surgeon has said that Tonia has Cervicomedullary syndrome.Tonia’s neck is dislocating on movement and as a result of her symptoms and his findings she needs to have urgent life saving surgery to stabilise this by fusion.

"The surgery would fuse her from the top of her cranio cervical spine C1 to T1.

"She also has a degenerative thoracic spine which is impinging her spinal cord and a potentially tethered cord which is causing many complications and a lot of pain.

"This is a huge and highly dangerous operation, but we now have a full medical report and have been told that it is her only chance.

"If successful, she will stop having respiratory arrests and seizures, and will get enormous pain relief. The tragic news is that if she doesn’t get the operation she will rapidly decline, and we have been told that she will not survive.

"We are desperate.

"I am assured by Professor Rodney Grahame - the Rheumatology expert who originally diagnosed Antonia in 2013 with Ehlers Danlos Syndrome that there is no one in the UK on the NHS (who can do the operation.)

"The infrastructure for neuro surgery for EDS in the UK is in its early stages and will take time and he says time is not on Antonias side. He has told me that he agrees that the only option in the circumstances is for her to have the needed further tests and surgery in Barcelona.

"We have been overwhelmed by the love and moral support from you all, but now we are forced to ask for help.

"With the help of Just4Children who are supporting Tonia in our campaign to raise the funds, we have set up a Just Giving page and we desperately need support.

"£200,000 is a substantial sum of money so realistically, the only way we could envisage raising it is with help of others."

Prior to her condition in 2013, Miss Payne-Cheney was a healthy girl, enjoying gymnastics and cheerleading but now she is hospital bed bound where her joints regularly dislocate.

The operation has been booked for Thursday April 12, with the family flying out on Friday April 6.

To donate, visit https://www.justgiving.com/campaigns/charity/just4children/toniasjourneyforsurvival