From a children's hospice in Bloemfontein to leading an international network, Joan Marston has made a major contribution to palliative care for children.

Joan Marston swoops Jose into her arms. "Hello beautiful boy," she says, kissing the toddler's forehead as he croons with delight. Jose is two years old and has trisomy 13, a rare condition caused by an extra copy of chromosome 13. He is one of 15 young patients at the Sunflower Children's Hospice, based in a house wrapped in trees and shrubs next to Bloemfontein's National District Hospital. Here children are cared for until they are well enough to return home, or to a foster family; or until they pass away.

When Joan founded the children's hospice in 1998, it was a first of its kind in South Africa. This was at the height of the HIV/Aids pandemic, with babies orphaned and dying around the country - with years of state-sponsored Aids-denialism still to follow under the presidency of Thabo Mbeki.

Inside the hospice house, Joan leads us to a small sitting room for the interview. She cuts a tiny silhouette, dressed in a light pink jersey over a floral shirt. But her petite frame belies a...