JOE Smith has the most wonderful bedroom. As he lies in bed he is surrounded by photographs of his mum and dad, two older brothers and little Rachel.

There are games, multi-coloured lights and a wall painted with a huge sun and moon. A music system is situated in the corner with a speaker near his bed playing Bob Marley, his favourite pop artist.

But he also has to contend with a permanent respirator and ventilator machine.

Joe is four-and-a-half. After an incident at the John Radcliffe Hospital, he has been left paralysed and brain-damaged. But though he stopped breathing for 25 minutes, his parents Wendy and Peter are grateful that he is alive at all.

They are taking the hospital to the High Court to try to gain compensation that will enable Joe to have proper respite care for the rest of his life. At the moment it is falling to his parents. Theirs is a 24-hour a day, seven-days-a-week, job. Last week they went to Sainsbury's together. It was their first joint outing for three years, in fact since Joe became disabled.

"We can go out separately and sometimes grab an hour in the pub, but never together," Wendy says.

Joe now goes to a special needs school, the Mabel Pritchard in Littlemore, once a week. Last week a nurse took him and gave his parents a chance to go out together.

They now live on income support and a carer's allowance - a far cry from their former wage packets. They are entitled to 18 hours a week of community nursing. But the Smiths have shed all their tears. The strength of their family unit and obvious love for each other shine through when you enter their home.

As if the odds hadn't already been stacked against them, it took three years to arrange a house transfer after their former property was condemned.

"Joe used to catch all sorts of chest infections because of the damp and mould. Now he rarely does. He had flu though this year and the doctors didn't know whether he would pull through, but he did and proved them wrong yet again," Peter says proudly.

Their new house in Greater Leys, specially designed for disabled families, has lifted their depression and is proving a tremendous boost to family life. To undergo the type of pressure Peter and Wendy have been under, not to mention their other children, is almost a miracle in itself.

The fact that they are still together is even more impressive, considering many couples in these circumstances buckle under the pressure.

But they don't for one second try to pretend that it's been easy. The whole family has been referred for psychiatric counselling at some point or other. The children need it because of the shock of what happened to their little brother when he was just ten months old.

The parents, too, because of the strain of living in a condemned house with a severely disabled child, all day, every day, with little help from the authorities, as well as bringing up the rest of their family. "We started taking it out on each other. We would store up all our anger and frustration and then start arguing with each other and it would all come out. Both of us suffered terribly emotionally," Peter says. "You can't imagine what it was like. It just ripped our life apart - our family, our marriage and our confidence," Wendy adds.

They have been together for 17 years and any sign of this hurt and anger has long been exhausted through hours of counselling and working through the difficulties together.

Both Wendy and Peter are former nurses. Wendy, who worked in a hospice, had given up work to bring up their children and Peter, who was a psychiatric nurse at the Warneford Hospital, was starting his own company at the time of the 'incident'.

As there is no state respite care in Oxfordshire and the Smiths cannot afford to pay a nurse or private home or hospital, they bear the care burden, not that they see it as such. Joe is a gentle, smiling, sweet-natured little boy, whose survival has astonished doctors, nurses and specialists across the medical field.

And that's where they get their strength and perseverance from. "He is our inspiration," Peter says. "Anyone who has been face-to-face with death and then survives it is an inspiration. If he can fight it then so can we," his dad adds.

What will make the fight a lot easier is a new computer that will enable Joe to communicate with the outside world.

He can gently squeeze with his hands, so could press a switch, which if attached to a computer could be used to reply to questions, and therefore educate him, as well as teach him to make his own choices.

In short, it would change his life. Aidis, a charity for the disabled, has agreed to buy and choose the equipment but needs to raise funds for the computer.

Wendy says: "We have been left so much in debt because we have had to buy all this equipment for Joe, from his special bed and buggy, to the exercise balls. It has cost about £10,000 so we cannot afford this computer. Hopefully the charity will raise the money and help Joe live a more normal life."

HOW YOU CAN HELP

Joe needs at least £1,000 towards the cost of his computer and readers of This Is Oxfordshire and theOxford Mail can help by writing a cheque to 'The Aidis Trust For Joe' and sending it to The Joe Smith Fund, Aidis Trust, 1 Albany Park, Cabot Lane, Poole, Dorset, BH177BX. Call the trust on 01202 695244, or make a donation on the Internet at www.aidis.org

It couldn't be simpler to help Little Joe.

We have set ourselves just seven days to raise the £1,000 he needs for a computer to communicate.

And with your help, we can make a real difference to Joe and his family. If you feel you can contribute please pick up the phone or send us an e-mail now.

To telephone: call the Little Joe hotline on 01865 425466 and pledge your money. To e-mail: littlejoe@nqo.com

Don't forget to follow the progress of our appeal throughout the week on This Is Oxfordshire and in the Oxford Mail.

Story date: Monday 07 February

Converted for the new archive on 30 June 2000. Some images and formatting may have been lost in the conversion.