Jill Farwell

Jill Farwell saw two of her three children die of a rare disease and turned her grief to good effect by founding in 1991 Children's Hospice South West, a children's hospice in Barnstaple, Devon. Hitherto, the nearest facilities had been in Oxford. Thanks to her, the 800 or so children in south-west England who have life-limiting or life-threatening diseases now have a local hospice.

Jill Challand, social worker: born London 8 March 1950; founder, Children's Hospice South West 1991; MBE 2003; married 1976 Eddie Farwell (one daughter, and one son and one daughter deceased); died Barnstaple, Devon 28 September 2004.

Jill Farwell saw two of her three children die of a rare disease and turned her grief to good effect by founding in 1991 Children's Hospice South West, a children's hospice in Barnstaple, Devon. Hitherto, the nearest facilities had been in Oxford. Thanks to her, the 800 or so children in south-west England who have life-limiting or life-threatening diseases now have a local hospice.

She was born Jill Challand in London in 1950, and educated at Braintcroft Junior School in Willesden. From there she won a scholarship to North London Collegiate School in Edgware, an exceptional school which greatly influenced the rest of her life. She read History at St Anne's College, Oxford, where she got a good upper Second.

She wanted to help those less fortunate than herself, and took a postgraduate degree in social work at Exeter University, afterwards joining Devon Social Services in Bideford, where she met her future husband, Eddie Farwell. After a spell in Gloucester, working for the Gloucester Diocesan Adoption Agency, she moved in 1977 with Eddie to Barnstaple, where she continued to work in child protection and was a research fellow in Exeter University's social work department.

Jill and Eddie had three children, Katie, who died at 11, Tom, who died at 15, and Lizzy. Almost all of us probably and unknowingly carry a gene for one of the several hundred inherited diseases, but chance usually ensures that we don't have children with someone who carries the same gene. Even when that does happen, the chance of a child of the union having the disease is only one in four.

It was Jill and Eddie's ill-fortune that they both carried Sanfilippo syndrome, one of a rare group of metabolic diseases. Moreover, the disease doesn't show until the child is about three, and, by the time their first child, Katie, was diagnosed, they already had their second child, Tom, who also had the syndrome.

The disease has three stages. First, as toddlers, children begin to become backward but are overactive and can be difficult. They are also prone to diarrhoea and infections, which are common enough in normal children, so it takes a perceptive doctor to order the tests that lead to the diagnosis. Later they become extremely active and difficult, taking little sleep at night. Their language and understanding is gradually lost. Finally, the children slow down, lose the ability to walk and communicate, and need a great deal of care.

Even the most devoted of parents need time off from ceaseless nursing duties, but the Farwells found that their nearest children's hospice was 200 miles away. So, after Katie's death in 1991 - she died in their arms at Helen House in Oxford - Jill and Eddie Farwell set themselves the task of raising millions of pounds. They gave talks, although they hated public speaking; and organised events ranging from cake sales to balloon races and garden tours. They attracted sustained support from throughout Dorset, Devon and Cornwall.

In 1995 they opened the hospice, Little Bridge House, near Barnstaple. It has eight beds, used for respite and terminal care, and a staff of 36. It is run entirely on voluntary donations and costs £3m a year to run, much of it raised by Jill and Eddie personally. The Cornish Hell's Angels support them. Noel Edmonds takes patients on helicopter rides. Dick King-Smith, the children's writer, helps out.

On her 45th birthday, the day that the first patients moved into Little Bridge House, Jill Farwell was diagnosed with breast cancer. The Farwells' second child, Tom, died in 1998 at home.

At the time of Farwell's death she was fund-raising for a second hospice, at Charlton Farm, near Bristol.

Caroline Richmond