Barbara Carlile has no memory of the accident that changed her life. She recalls being a pillion passenger on her husband Flori's Yamaha V-Max. "It was a beautiful spring day, a Sunday morning in March, and I was sitting on the back of the bike," she says, piecing it all together six years later.

Barbara Carlile has no memory of the accident that changed her life. She recalls being a pillion passenger on her husband Flori's Yamaha V-Max. "It was a beautiful spring day, a Sunday morning in March, and I was sitting on the back of the bike," she says, piecing it all together six years later.

"We were living in Manorhamilton, Co Leitrim, and were on our way to a market near Swanlinbar in Fermanagh, just 10 miles away."

She could feel the breeze, smell the freshness in the air. She never saw the car that hit them, heard Flori's swerve to avoid it or felt the vertebral snap of impact. Then, silence and darkness.

When she awoke days later in Belfast's Royal Victoria Hospital she was confused by the unfamiliar pattern on the ceiling. From a babble of voices she picked out her sister Sally speaking to a man in a white coat, then saw her brother Paul sitting at her bedside.

"He looked worried," she remembers. "I couldn't feel anything but when I saw Paul and Sally I began to think, 'I'm not dead'. I had no idea where I was. I felt very lost and just relieved that I was still here."

Unable to speak, she motioned for something to write with, scrawling on a piece of paper the words 'I can understand you'.

Having stabilised by the end of the week, Barbara's situation was explained by her surgeon in the most unequivocal terms. "He said, 'There is no chance you are going to walk again. You're paralysed from the chest down; we need to build up your strength'."

While she contemplated seismic changes to her life, Flori lay crumpled on a bed in a male ward down the corridor. One of his legs sat encased in a circular wire frame. The other leg was also fractured and while he, too, reflected on their life ahead, he was struck by the number of young men around him. They lay with legs encased, their futures re-cast by the summary justice of punishment beatings and paramilitary kneecapping.

For Flori, it was a brutal introduction to the world of trauma, whether occasioned by acts deliberate or accidental. Two rooms away, his wife lay virtually immobile; memories of walking, running and dancing were slipping inexorably into the past.

Barbara grew up in Monkstown, the third child in a family of seven. After leaving school she lived in Germany, Amsterdam and London, turning her interest in art and sculpture into a career before moving to New York where she worked in a Manhattan art gallery. She met Flori there and they married at City Hall, deciding to come back to Ireland in 1999.

At first she got hotel work in Derrynane, Co Kerry, but work was seasonal so they moved to Manorhamilton where there was a growing artistic community. Five months later, life changed on that crisp Sunday morning.

Barbara was moved to the spinal injury unit at Musgrave Park Hospital, during which time her father Harry passed away. Determined to press on, she transferred to the National Rehabilitation Centre in Dun Laoghaire where she found physiotherapy excellent but the institutional regime stultifying. After seven months, she discharged herself and moved to wheelchair accessible accommodation in Carlow and Wexford with Flori.

Her injuries left her with respiratory and metabolic complications, exacerbated by a damp Irish climate. With little prospect of ever returning to work, the financial consequences of the accident were offset somewhat by an insurance settlement that gave the couple some degree of independence. Barbara went to France to try specialist laser treatment. On their return, she and Flori decided to open a new page by moving house to sunnier climes.

They packed up their Ford Focus and took the ferry to Cherbourg, living nomadically until they happened upon a farmhouse for sale near the Pyrenees. With broad doors and an open plan, it was wheelchair-friendly and they chose it as their new home.

Flori recovered well from his injuries and, despite bouts of melancholy, Barbara feels she has adjusted to circumstance. It has been a difficult period, as her mother May lived with Alzheimer's for 18 years before finally succumbing last year.

The experience of enduring her mother's illness galvanised Barbara's resolve to do something about her own situation. "When you are in hospital or rehab, it's pretty much drummed into you that this is it, get used to life in the chair because you won't walk again. I think it induces a certain passivity. I went through it myself and it takes something to break out of it."

Using the internet, she began to investigate current medical research on spinal cord injury. The notion of a cure, cursorily dismissed, began to take root.

"Here was all this research going on and it seemed to me that if there was a solution it would have to be a global thing. "There are a lot of national websites on spinal cord injuries but nothing where this information and energy could be pooled, to bring it all together. A cure is not some fantasy or false hope in our heads. Scientists are working on it."

The upshot was Stepnow (http://www.stepnow.org/index.html), an internet-based activist group for people living with spinal cord injury. "I wanted the site to focus specifically in on a cure.

To raise awareness and to get governments to put more money into research on spinal cord injury. Government funding policies affect people's lives. Part of Stepnow is to get our voice heard."

What began in Barbara and Flori's living room on April 4 now embraces over 40 countries. E-mails coursed to their farmhouse from Russia, Puerto Rico, Norway and Cuba. It was an internet church for many who had long felt excommunicated.

"Sometimes I get quite emotional about this," says Barbara. "If you're paralysed you live in your own world a lot of the time and this just blasted that wide open. You know what all these people are going through but everybody is just getting on with it.

"Actually, I would consider myself one of the lucky ones. I can use my arms and hands and breathe on my own. A lot of others can't do that."

Stem cells could get us back on our feet

For an ever-expanding membership of 300, including 21-year-old Dubliner Geoff Harte, Stepnow is an important development. Almost three years ago, Geoff broke his neck playing rugby and, after a long spell at the National Rehabilitation Centre, is now doing Business Studies in Trinity College.

"I thought Stepnow was a great idea and wanted to get involved," he says. "The idea of everyone in the world with a spinal injury coming together can really make an impact."

The main hope for treating paralysis lies in stem cell research. Stem cells - whether umbilical, foetal, embryonic or found in the bone marrow of adults - have the capacity to regenerate and replace damaged cells.

However, embryonic stem cell research is illegal in Ireland and US President George Bush vetoed federal funding in the field. Many members of Stepnow argue that the issue is plagued by misrepresentation.

"Stem cells can reproduce themselves," explains Barbara Carlile. "They are our repair unit. The embryonic stem cell has the potential to grow into any type of specialised cell. We don't see this as a battle between embryonic or adult stem cells. Research needs funding for both.

"Following Bush's veto, controversy arose because of the implication that stem cell research involved killing babies. That's just gross misinformation. What we're actually talking about are unused embryos from IVF clinics - about 350,000 embryos are discarded annually in the US. Of course research needs to be regulated, but the information that can be got from this could change the face of medicine."

"People do associate embryonic stem cells with abortion, but that's just ignorance," says Geoff Harte, who believes research should proceed as a matter of urgency. "It's going to happen, and we have to move that along."

On October 4, Stepnow will launch a global mailing campaign to lobby governments to support this research, and a delegation will meet with Minister for State Noel Treacy.

"My motivation for getting behind this is not really for myself," says Barbara, 51. "Sometimes I think it's a kind of tribute to my mother and her struggle with Alzheimer's. This is the kind of thing she would have done if she was able..

"An awful lot of young people get high neck injuries due to car accidents. I know what it's like and don't want anyone else to go through it. I don't really believe I will ever walk again but I'd like to see that someone who wakes up in intensive care will not be told what I was.

"Instead, someone will say to them, 'We will get you back on your feet'."