It was a story that moved people across the globe. First came the bond between Sister Frances Dominica and little Helen, a toddler who had suffered brain damage following the removal of a brain tumour.

Then, from the Oxford nun's friendship with Helen's parents, grew the germ of an idea to create the world's first hospice for children, leading to a remarkable appeal. It captured the imagination of a city and later the hearts and minds of people who had never even set eyes on Oxford.

Over 19 years Helen House has continued to attract support from people of all kinds of backgrounds, from senior members of the Royal family to inmates of Her Majesty's prisons.

And most importantly the hospice has been able to become a home-from-home for many terminally ill children, who have been able to enjoy short stays to offer relief to their families.

But it emerges this week that there is to be a new chapter in the Helen House story.

For a blind young man, who regularly stayed at the hospice in the grounds of the All Saints Convent over a decade, has inspired Sister Frances, 56, to launch another appeal.

Only this time, it is not £450,000 that she is trying to raise but £3m.

And it is not ill children and their families she is trying to help, but teenagers and young adults with life-limiting illnesses.

Douglas Bell, like his sister Penelope, was diagnosed with Batten's disease soon after starting school. His mother, Val Bell, recalled the terrible morning when her young son could not find his shoes in his bedroom. "He was aged five. At first I thought he was joking when he said he could not see them," said Mrs Bell, a nurse. "Then I realised that he had lost his sight." After the death of his sister in 1985, Helen House became increasingly important to Douglas. It was a place where he knew he could talk and exchange memories about her.

Douglas stayed at Helen House on more than 80 occasions between the age of 15 until his death in 1993, aged 24.

Mrs Bell, who, with her husband, Iain, then lived in Bedfordshire, said: "Parents of children with life-threatening illnesses have this great fear about how they will manage as their child becomes older.

"Douglas was becoming heavier and harder to look after. I did not want him to go to some unsuitable institution with no specialist care.

"The first time I saw Helen House I was overwhelmed. They accepted the whole family, without conditions. It quickly felt like home."

Just as the three-year-old Abingdon girl Helen had, Douglas was to make a deep and lasting impression on Sister Frances, the children's nurse who went on to become a Mother Superior.

As happy as Douglas and Penelope were during their stays, Sister Frances was uncomfortable about seeing Douglas and others being cared for in an environment expressly created for children.

"A six-foot, 14 stone, 21-year-old man in the hyperactive phase of one of the mucopolysaccharidoses needs a different environment for respite care from that which we can provide now," said Sister Frances.

So she has decided to build a new hospice for young adults and Douglas's parents are overjoyed that it will bear their son's name.

"We are proud," said Mr Bell. "It is good that something good has come out of what has been a difficult period for us. The way we look at it, Douglas will always live on with us. "But he was enormously popular with the staff at Helen House and we like to think that what he went through with his illness has helped bring this about."

Douglas House will be separated by gardens and an orchard from Helen House, in the grounds of the All Saints Convent, in St Mary's Road, Oxford.

It could be open as early as 2002, if the new appeal has the same impact as the campaign for the children's hospice, which has become a model copied all over the world.

So what exactly is a respice? Sister Frances explained: "Seventeen years ago a visiting neo-natologist from California suggested that we call Helen House a respice on the basis that where there isn't an appropriate word, it is possible to create one.

"Hospice with its connotations of terminal cancer, has not always stood us in good stead. So now, all these years on, we have the cougage to take Bill Silverman's advice.

"We do not envisage a high proportion of young people with cancer using Douglas House, any more than is the case with the children's hospice. Rather it may be used by young adults with genetic conditions such as muscular dystrophy, cystic fibrosis, congenital heart disorders and illnesses such as motor neurone disease. People who will come here will have life-limiting illnesses of all kinds, and it may be that their illness is at a very early stage. If it is a long illness, home is the ideal place, but families will need respite care." It is planned that Douglas House will be a small, informal place, with seven en-suite bedrooms, living rooms, a pool and music and computer facilities.

"The idea has grown directly out of the years of experience with Helen House," said Sister Frances. For everyone in Oxfordshire, that should be recommendation enough.

Anyone wishing to donate money to the appeal should make cheques payable to Douglas House. They should be sent to Douglas House Office, 110 St Mary's Road, Oxford OX4 1QD.

Story date: Saturday 27 November

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