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'I was going to plan my wedding - then plan my funeral'


Survivor: Ciara
Ebbs now raises
funds to help
others with spinal

Survivor: Ciara Ebbs now raises funds to help others with spinal injuries

Survivor: Ciara Ebbs now raises funds to help others with spinal injuries

Death is not something many twentysomethings have to think too deeply about; a broken neck, an extremely aggressive tumour or paralysis are not the lot of the average 24-year-old. Ciara Ebbs has suffered all three and has, along the way, planned her own funeral. Now more or less out the other end, for a girl who has gone through so much, she is unbelievably lively, happy and full of fun.

When I met her at home in Dunboyne, Co Meath, this week, there was little evidence of what she has suffered -- except for a slight stiffness in the way she holds her neck, you would not realise that she was once close to death's door.

Ciara can talk for Ireland -- and it is a gift she has been putting to good use since her illness, fundraising for the Spinal Injuries Unit at Mater Hospital in Dublin. It is a unit she spent a lot of time in (she spent a year in hospital) and she's now determined to "give something back".

Despite her battle to regain her health, Ciara has already raised over €25,000 for the unit. To this end, she ran the mini-marathon herself twice (in a wheelchair in 2005 and, by sheer force of will, on foot in 2006); she has also organised a beard shave and a fancy-dress karaoke night.

Earlier this year, she took the brave decision to "do something big" in 2007. With help from the people at the Mater Foundation, Ciara organised a fully fledged charity ball, which is taking place tomorrow evening in the salubrious environs of Dunboyne Castle Hotel.

Ciara's dream is to raise enough funds to open up a badly needed Family Room beside St Agnes's Ward, the Mater's Spinal Injuries Unit. This would be of immense benefit to the families of patients with spinal injuries, who often need a prolonged hospital stay. St Agnes's ward currently only has six beds, but is now being upgraded to accommodate 10.

Ciara enjoyed perfect health until three and a half years ago, when she was a second-year student of Business, French and Computers at Blanchardstown Institute of Technology. Her illness began innocuously enough in April 2004, when she experienced some discomfort in her neck. Towards the end of April she was messing in the back garden with a friend who playfully twisted her neck a little.

She felt a little crunch, but thought no more of it. Throughout May, the month she celebrated her 21st birthday, her neck was, at times, a little painful. But on May 22, she slipped in the shower and knew immediately that something was seriously wrong. She was rushed by ambulance to Blanchardstown Hospital, where it was discovered -- much to the horror of the doctors and her parents -- that her neck was in fact broken. It was the beginning of a nightmare ordeal that would change the course of Ciara's life.

She elaborates: "I am convinced my neck broke that day in the garden. I was going around with a broken neck for nearly a month. If I'd fallen over or knocked my head during that time I could have died or been paralysed or become a quadriplegic. I was really blessed.

"Once they discovered that my neck was broken, the doctors told me to 'just relax'. They put me in a hard collar for a week and then I was in a halo brace for 10 weeks." The long and unusually hot summer of 2004 was a very difficult one for Ciara. The brace -- which she and her friends decorated with pink hearts and sparkles in an effort to lift her spirits -- was uncomfortable and, much to her doctors' alarm, the pain in her neck was worsening.

That August, the medical team discovered that, instead of knitting back together, the vertebrae in her neck were, in fact, collapsing.

A scan found a cyst in the vertebrae which was causing the bone to crumble. Soon afterwards, doctors broke the news to her that she had a rare and aggressive tumour called 'Giant Cell tumour' which is benign, but acts cancerous.

It is a young people's tumour which affects one person in a million every year. Ciara's case was even rarer -- she is believed to be the only case of Giant Cell tumour of the vertebrae in Ireland; usually Giant Cell affects the long bones in the arms and legs.

It was devastating news, but at least the doctors now understood what had caused her neck to break so easily, and why the halo brace hadn't worked. In September, the mushrooming Giant Cell tumour caused her to lose mobility in her arms, and by the end of that year her health was in rapid decline. The new year didn't bring any respite. In January 2005, doctors made the grim discovery that the tumour had spread not only to her spine, but also to her lungs.

"I was told the tumours in my lungs were inoperable. I had been feeling really bad; I had a constant chest infection and I knew my breathing wasn't right. A chest X-ray found that my lungs were full of tumours. My consultant, Mr Ashley Poynton, told me that the tumour had come back in full force.

"I was crying when I heard this and I went down on my knees to Mr Poynton -- who I call Mr P -- and I begged him 'Mr P, please fix me'. I knew the prognosis wasn't good. I was going to go off and plan my wedding to my fiance Gavin and then plan my funeral."

In early February, Ciara had to undergo a major operation as the growing tumours were beginning to compress her spine. These were indeed her darkest days.

"After that operation I woke up in intensive care and couldn't move anything. I was paralysed. I was incubated as well. Not being able to move was the scariest thing I have ever experienced," she says.

In March she was sent home from hospital; she was in a wheelchair and was expected to die. Nurses came every day to her house to deliver palliative care -- managing her pain and ensuring that she was comfortable.

"I refer to that time as my 'remote-control throwing' phase. I was just so angry. But during that summer, I began to slowly pull myself out of it," says Ciara.

It was a very slow road back to where she is now. Ciara attributes her recovery to "a combination of determination, surgery, physiotherapy, amatasu (which realigns the body), Sean Boylan and the herbs he gave me, prayer, and lots of good happy thoughts".

"I still do physiotherapy," says Ciara, "as I don't have full use of my right arm. The tumours in my lungs have stopped growing; they might even have gone away -- I don't actually know as I haven't had a scan in a year. But my prognosis would still be classed by the doctors as 'guarded'."

Having fought an uphill battle back to health, Ciara is now enjoying life to the full. She has a new boyfriend, Gerard, who studies Sports Science in Kansas -- she is well enough to travel to the US to see him. Indeed, after Christmas she is hoping to be able to spend a couple of months living out there.

"Nobody expected me to live but I kept fighting. I am so lucky to have the friends and family I have. Gerard has been so good and understanding and so patient. I have often asked him why he wants me because, 'I'm broken', but he says that he loves me for me and what has happened to me is part of me, so he doesn't care.

"My parents have been through the mill, as have my cousins and aunts and uncles who all support me and love me. My ex, Gavin, also was my rock through all this and we are still the best of mates. I can honestly say that I wouldn't give back one day of my experience. It has made me who I am today.

"I am going to continue to raise funds and try to give something back to all those people who helped put me back together." Giant Cell tumour affects one in a million and, surely, Ciara Ebbs is one girl in a million if ever there was one?

Ciara's Charity Ball in aid of the National Spinal Injuries Unit at the Mater Hospital is tomorrow at Dunboyne Castle Hotel, Co Meath from 6.30pm. Visit the Mater Foundation's website on www.materfoundation.ie, or telephone (01) 8303482..