This week is National Children's Hospice Week. Health Editor Barry Nelson meets the mother of a profoundly disabled teenager who is making the most of a North-East facility.

Hilary Wadge has just had her first holiday for 15 years. Rather than jetting off to Benidorm, the 43-year-old single mum from County Durham chose to spend her precious vacation driving the support van which accompanied six fundraisers, cycling the 140-mile route from Whitehaven to Sunderland.

"If you had seen some of the hills they cycled up, you would have understood why I wanted to drive," jokes Hilary, who lives in Framwellgate Moor near Durham City.

The reason she opted to help raise funds rather than lie on a sun lounger was the gratitude she feels for St Oswald's Hospice in Newcastle.

Since the hospice opened a children's wing a few years ago, increasing numbers of parents from County Durham have entrusted the Gosforth centre with their children. One of a handful of specialist children's hospices in the region - along with the Butterwick centre in Stockton - St Oswald's provides a range of facilities for the parents of children with severe, life-limiting illness.

For Hilary, St Oswald's has provided a vital lifeline and what better way to thank them than helping to raise money towards the £4.5m the hospice needs to raise every year?

That first precious holiday was only made possible because Hilary was totally happy about leaving her severely disabled son, Alasdair, in their expert care. "It was extremely difficult leaving him, but knowing how well he was being cared for and that he was having fun made it possible. It was also great to be able to raise money for St Oswald's and give something back."

Since he was born 15 years ago, Alasdair, has been at the centre of Hilary's life. While most patients dote on their children, in Hilary's case this has become a virtually full-time, round-the-clock activity.

Alasdair was fine when he was born at what was then called Dryburn Hospital in Durham, but only two days later he suffered a severe hypoglycaemic attack.

"Because his body was not producing any blood sugar, his major organs started shutting down. He was so ill he needed to be put on a ventilator," says Hilary. "They did a fantastic job to save him, but unfortunately his severe illness left him with cerebral palsy, cortical blindness and epilepsy."

Registered blind and unable to walk or sit without support, Alasdair is totally reliant on his dedicated mother. Even when he goes to bed, Hilary has to be on duty. Every few hours she has to get up and move her son, because potentially dangerous secretions build up in his chest. There is a sophisticated monitor which sounds an alarm if Alasdair is having difficulty in breathing.

The specially-equipped bungalow in which they live has helped Hilary cope, as well as the care staff who come in daily to help to bathe Alasdair and get him up for school - but the stresses and strains of round-the-clock care have inevitably had an impact.

Just over two years ago Hilary realised she desperately needed a break. "I realised that I was neglecting my own health. I couldn't justify taking time off to see a GP. I was getting more and more stressed and my health took a turn for the worse."

Looking back, Hilary realises that this was a turning point in her life as a carer. "It took me a long time to admit that I needed a service like St Oswald's. I got to the point that I was absolutely burned out - to the extent that I was unable to really care for Alasdair."

Between them, social services and the NHS suggested Hilary should apply for respite care at one of the region's specialist children's hospices. The assessment by a social worker recommended that she should have around 48 days respite a year.

"Butterwick was the first place I visited, which was very nice, but they couldn't give me as much time as St Oswald's," she says.

That was nearly two years ago and since then Hilary and Alasdair have been regular visitors. "When I come here I know he is so well looked after that I can relax," says Hilary.

"It took a while to overcome feelings of guilt, but I have learned to actually focus on something other than Alasdair. Coming here allows me to do simple things that other people take for granted, like enjoy my breakfast, put my make-up on and go out and do something that I want to do."

While his mum is shopping or meeting friends for lunch, Alasdair mingles with other young people staying at the hospice and takes advantage of facilities such as the sensory room.

"For the degree of disability he has, I am really proud of him. He uses simple signs to communicate with me and with other people. He can signal if he wants something to drink or if he wants something to eat, for instance," says Hilary.

"He can understand a lot of what is said. You can bet your bottom dollar that if somebody is telling a rude joke he will be laughing. In many ways he is just a typical teenager. He likes his music, he follows football. He's a Sunderland fan."

While Hilary enjoys the friendly environment at St Oswald's and the jokes with staff, there is a very sombre side. Like virtually every child cared for at the hospice, Alasdair has what is described as a life-limiting condition. His underlying weakness means he cannot fight off minor infections as easily as other teenagers.

This was brought home to Hilary last year, when Alasdair become very seriously ill. "He nearly died. The doctors gave him two days to live," says Hilary.

With a lot of hard work and a bit of luck, doctors and nurses at Newcastle General Hospital were able to pull him through. "It brought home just how vulnerable he was. Faced with losing him, I was in bits," says Hilary.

Janet Jackson, the chaplain at St Oswald's has helped Hilary come to terms with the fragility of her son's existence. After a lot of tears and talk, Hilary feels more prepared for an eventuality she dreads. "Thanks to Janet's help, I have now got a written plan which is sitting in a drawer," she says.

Aimee Anderson, the St Oswald's Hospice communications manager, is keen for more people living in County Durham to be aware of their children's wing.

While the neighbouring adult hospice caters for patients from Tyneside, Wearside and Northumberland, the children's unit is reaching out to people who live south of the Tyne.

Hilary can't speak too highly of the place. "This is a close community,"he says. "Everybody knows everybody else and we all support each other."

For more information about St Oswald's visit www.stoswaldsuk.or