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 powerhouse legacy. At 72, Joan’s career in paediatric palliative care packs a punch in South Africa and abroad. Her pioneering work has touched young lives around the globe, in countries as far afield as Belarus, Russia, the Ukraine, India and Malawi.
Joan understands the pain of losing a child. Her first son died as a baby due to a brain anomaly. After that, Joan and her husband, Richard, had another son and a daughter. “Having my own two children who are lovely and healthy may have played a part in my passion to help others less fortunate,” she says. “The other part simply is I’ve always had a specific connection to children. Also, it was really just seeing all those kids suddenly referred to me, and they were dying.”
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