The North-East has more than 1,000 children with life limiting or life threatening conditions, but only a handful of specialist hospice beds. Women's Editor Christen Pears meets two women who are campaigning for a new children's hospice for the region.

GRACE Jones is lying on the sofa, her beautiful blonde curls fanning out on the cushion behind her. Her eyes follow me as I walk across the room but she doesn't move. A drip stands on the floor next to her, feeding her directly into her stomach.

Grace will celebrate her fourth birthday next month and yet she is more like a four-month-old baby. She can't do anything for herself, needs 24-hour care and is totally dependent on her parents, Debra and Darren.

They still aren't entirely sure what her illness is. It may be Rett Syndrome, a rare genetic condition that affects only girls, but, despite many trips to specialists, no-one has been able to confirm it.

"We knew something was the matter with her when she was just a day old and had a massive seizure," says Debra. "She had more fits but all the tests found nothing and we took her home - but something was wrong. We realised it when she got to four months and she still couldn't hold her head up. She was progressing far too slowly.

"In the early days we were just desperate to have answers, to belong to a group of people so we could have support. Grace used to scream every hour of the day and night - so badly her throat would bleed - and we had no idea what the matter was. We wanted to find out what it was so we could help her, but we still don't really know. It may be Rett Syndrome but no-one can confirm it.

"When I first heard the words 'severely handicapped', I was devastated because everything I had wanted for her was never going to come true. I had very set ideas about what I wanted. We used to talk when I was pregnant about her going to dancing classes, going to the school I went to, but now we have different hopes and dreams for her. I want her to be pain-free and happy. That's all I hope and dream for."

Things have improved since the couple moved to their current home in Sunderland, a terraced cottage where the front room is brimming over with Grace's toys. Grace seems to be more settled, she goes to special school and she dotes on the dog her parents bought for her. And now she's the face of a campaign to raise £5m for a children's hospice on Wearside.

In the North-East, there are more than 1,200 children who would benefit from hospice care but at present, there are only four beds, at the Butterwick Children's Hospice in Stockton. When it opens next year, St Oswald's in Newcastle will provide a further eight but the region will still have some of the most meagre provision in the country.

Television and radio personality Kathy Secker became interested in children's hospices through her charity work around 18 months ago and, after extensive research, set up a charity to raise funds for a hospice on Wearside.

"The provision we have at the moment is wonderful but there just isn't enough of it," she explains. "I have talked to families who have children with life limiting conditions and all of them said they would love to have somewhere where they could take their children or for them to have a break. I have talked to families who have lost children and they say they would all have benefited from a hospice."

The Grace House Sunderland appeal was launched at the end of last month with the aim of raising £5m in three years. The hospice will provide respite and terminal care for children suffering from life limiting and life threatening conditions.

"I've visited hospices all over the country and they're wonderful places," says Kathy. "They're so bright, so full of life. Grace House will be like that. It will be a home from home for children and their families."

Kathy is currently running the fund-raising single-handedly from a tiny office on a Sunderland business park, fitting it in between her work commitments. When I visit, she's fielding calls from people who want to make donations and opening huge piles of post.

"We're still at the very early stages but we've had an amazing response. It's really very touching," she says.

Kathy is working closely with medical professionals and a board of trustees, which includes businessmen and leading figures from the local community, as well as Darren and Debra Jones.

They became involved in the hospice appeal when Kathy contacted Sunderland Royal Hospital and asked whether they knew of anyone who might be able to represent parents on the board of trustees. The couple agreed straight away.

"I wanted someone who would be able to tell it as it is, someone who knows what it's like to have a child with a life limiting condition and how much they would benefit from a hospice," says Kathy. "None of us can imagine what it's like but they live with it 24-hours a day."

Because of the time they need to spend with Grace, Darren and Debra rarely go out. They've been away once since she was born, leaving her with Debra's mum. But when they came back she had taken ill and was in hospital.

"We haven't been away since then," explains Debra. "If there was a hospice, we would feel much happier. I work two nights a week as an auxiliary nurse and Darren works away a lot so I'm often on my own and it can be quite hard work physically. Sometimes, you just need a break.

"I know there are some parents who wouldn't want to leave their children but we want there to be family rooms for parents and brothers and sisters. There will be a holistic approach so they can get used to the staff and build up a relationship with them."

But although Debra admits she's sometimes found it difficult, she has never doubted that she can cope with Grace's condition.

"Right from the start I realised I just had to. I am the only mum she's got so I have to get on with things. It didn't take long for me to think that she had come to me for a reason and as she's got older and the hospice has started, I can see it even more. I am good for her and she's good for me and she's doing great and wonderful things.

"Of course I worry about her, I'm anxious about her but I know I have to stay strong. I can't think about the downside and that we may not have very long with her. I want to make the most of her now. When the day does come, I don't want to be thinking I wish I had spent more time with her. She's a joy, perfect in every little way."

WANT TO HELP?

The campaign is based at Grace House, Suite P1, North-East of England Business and Innovations Centre, Sunderland Enterprise Park, East, SR5 2TA. Tel: (0191) 5166302.