Without the Butterwick Children's Hospice, many North-East families would be in dire straits. Health Editor Barry Nelson meets one remarkable family who have found the Stockton hospice invaluable.

DENISE and Eric Shotton deserve a medal. Looking after one severely disabled child 24 hours a day is heroic enough. But to look after two children with life-limiting conditions is verging on the saintly.

What makes this North Yorkshire couple even more remarkable is that the children they adore are not even their own flesh and blood - they are adopted.

Denise, 49, and Eric, 58, were already serial foster parents until two-year-old Adam was referred to them 11 years ago. The couple were recovering from the traumatic effects of losing a little girl with special needs whom they had been looking after when they were asked to take in Adam.

"When we first saw him I remember thinking what a beautiful child," says Denise, who has two grown-up daughters and three grandchildren who all live in the Catterick Village area.

Adam was born with profound learning disabilities and life-threatening, severe epilepsy, which can strike at any time. He hadn't been with the Shotton family for very long before the first major crisis came along.

"He clambered onto my younger daughter's knee and had a massive seizure. It was really, really bad," remembers Denise.

Coming back from the Friarage Hospital at two in the morning after Adam had been admitted, Denise remembers being terrified of having to give him up to another family.

"I suddenly realised I didn't want Adam going anywhere else. I wondered how on earth I was going to tell Eric but he said, 'that's how I feel as well'."

This led to the Shottons taking the highly unusual step as foster parents of applying for adoption. "I remember thinking that Adam's skills are minimal, he can't even open a door himself. You have to accept what he is able to do, you have to be realistic and I didn't want him to be rejected by another couple."

Overcoming the bureaucratic hurdles of adoption took some time but, undeterred by their experience, the Shottons did it again a few years later when they were asked to foster another profoundly disabled child.

Jacob was only a few weeks old when he came to the Shottons but a strong bond of love was forged very quickly.

Born with an unusual genetic disorder called cri du chat, which left him severely disabled and with profound learning difficulties, Jacob rapidly became a full member of the Shotton family.

"The first thing was a phone call asking us if we could take him. We were warned that his life expectancy was very poor," says Denise.

A bizarre symptom of the condition meant that as a baby, Jacob made strange, cat-like mewing sounds. Like Adam, Jacob has severe scoliosis, a back condition which means both are strapped into back braces for hours every day in an effort to straighten their spines.

In a way, the fact that the Shottons were already providing 24 hour care for one adopted child meant that a second child could be fitted into a family routine which some people would find the stuff of nightmares.

Denise will hear none of it.

"You just get on with it, don't you?," she says brightly. "You just get up in the morning and feed, dress and wash them. Then Adam has to be put into his back brace and Jacob has to go into what we call his second skin."

Denise and Eric are full of praise for the support they have received from the family and the local community, and the expertise provided by medical and nursing teams based at the Friarage Hospital in nearby Northallerton.

But in the last couple of years, another essential part of their lives has been the Butterwick Children's Hospice in Stockton.

The hospice group, which needs to raise more than £1.4m in donations every year, provides the couple with a total of 14 nights' respite care each year. Because the boys had never spent any time away from their adopted home, Denise feared the worst.

"They don't have speech and they are very vulnerable children," she says.

But the youngsters have become firm favourites with the hospice's specially trained staff and the Shottons now feel perfectly happy about leaving them.

"The first time I left them there I cried all the way home," says Denise, who has become a huge fan of the hospice.

The vital respite care gives the couple a chance to catch up with the rest of their family. "It gives us the chance to be mum and dad to my two girls and to see more of the grandchildren," says Denise.

Another aspect which appeals to her is the friendly informality - and the sense of humour, which helps everyone get through sometimes difficult experiences.

"Looking after children like Adam and Jacob means you have to be open, honest and have a strong sense of humour... or you won't survive," says Denise, who describes her two adopted boys as "loving, affectionate children".

Graham Leggatt-Chidgey, chief executive of the Butterwick Hospice Care group, which includes the neighbouring adult hospice in Stockton and the long-established adult hospice in Bishop Auckland, is thrilled that families like the Shottons have so much faith in their organisation.

But he knows that meeting the needs of the 80 families from Newcastle to North Yorkshire who rely on the children's hospice does not come easily or cheaply.

"We have to provide good quality care 24 hours a day and for seven days a week and to do that, we need to attract high quality staff," says Graham.

While Butterwick relies overwhelmingly on people putting their hands in their pockets throughout the North-East and North Yorkshire, a recent lifeline has been an annual grant of £150,000 from the New Opportunities Fund.

But the Butterwick boss worries how the charity is going to make up the difference after this allocation dried up earlier this year.

"At the moment, that hole in our funding is still there for next year," says Graham, who is seeking to raise the issue with ministers and try to increase funding from local primary care trusts.

Apart from planned respite care, the Shottons also know that in an emergency, Butterwick would provide essential support.

"If I have an emergency, Butterwick is the place I turn to. What is wonderful about the place is that nothing is too difficult for them. I feel I can talk to them and they look after the whole family," says Denise.

* To support Butterwick Hospice Care ring (01642) 624231 or visit the website, www.butterwick.org.uk