In a week-long special, Fran Bardsley speaks to staff, children, and families whose lives have been touched by the work of Helen House in Oxford.

For Eddie Farwell, as with many people, his first association with Helen House came at a difficult time in his life.

It was a year after his two children, Katie and Tom, had been diagnosed with a rare and fatal degenerative disorder, called Sanfilippo disease.

Mr Farwell, from Barnstaple, in North Devon, recalled: "We had been given this terrible diagnosis, which meant although we were presented with two seemingly perfectly healthy children, we knew they were going to die before they reached adulthood."

The two children - aged four and one - went through periods of hyperactivity, exhausting their parents and forcing them to sleep in shifts.

Mr Farwell said: "We fell into a sort of melancholy. Not only were we tired, we really had no solution.

"Friends and family could offer support, but they had their own lives to live - fundamentally, you're on your own."

When Eddie and his wife Jill, who died of cancer in 2004, first heard about Helen House in 1984 they thought it would be somewhere for the future.

When the family was near Oxford on a trip they met Sister Frances Dominica, the founder of Helen House.

Mr Farwell said: "She told us 'Helen House is for you, why don't you come up here as a family and we'll look after you'."

For the next few years - until Katie died at Helen House aged 11 in 1991 and Tom at home aged 15 in 1998 - the family were regular visitors to the hospice, in Leopold Street, East Oxford.

Mr Farwell said: "We seldom ever left our children there, because we enjoyed being with them.

"If you have got a normal child, you're trying to wean them into independence - but if you have got a child who's going to die, all that is really turned on its face.

"We wanted to spend quality time with our children.

"Helen House offered us something nowhere else appeared to offer - care for the whole family - and it was absolutely and fundamentally ground-breaking."

The couple had a third, healthy child, Lizzie, who is now 21, and Mr Farwell said his daughter has nothing but happy memories of visits to Helen House.

Mr Farwell said: "We used to drive up from Devon - the children usually being sick on the route and fitting - so it was never a pleasant trip, but it was always worth it, because of the quality of care."

So impressed was Mr Farwell by his family's experiences, that he woke up one night and decided that more specialist children's hospices were needed.

He and his late wife established the organisation Children's Hospice South West and began fundraising for the project.

In 1995, Little Bridge House, in Fremington, near Barnstaple, was opened.

Demand for its services grew and, in 2004, it was decided to begin fundraising for a second centre.

In April this year, Charlton Farm hospice was opened in Wraxall, just outside Bristol.

Mr Farwell said: "We owe Helen House such a level of thanks and gratitude not only for the care they provided for our children, but also providing us with inspiration.

"It was where our children were happy and able to express themselves and experience things we couldn't do with them."

He added: "It's not a sad or a dark place. Helen House changed us for the unutterable good and transformed our lives.

"I think I'm the only bereaved parent who is the chief executive of a children's hospice and that certainly puts me in a unique position, but I also think it puts me in a privileged position to be able to set the standards of what we should be achieving in terms of making the most of short and precious lives."

For more information about Helen House and Children's Hospice South West, see their websites at www.helenanddouglas.org.uk and www.chsw.org.uk