Sunflower’s arising star

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Maricelle Botha

The city’s Sunflower Children’s Hospice is celebrating 15 years of palliative care for children. This hospice was formed to care for terminally ill children at home, day-care and in Sunflower House.  This anniversary year entails a lot of exciting ventures for the hospice and from 6 to 20 May the hospice will be organising many different events to celebrate. One of the highlights of the year is an introduction to and documentary on the life of Naledi Kopane, one of Sunflower’s patients for the past 22 years who is living with a life-threatening condition.

Kopane was one of Sunflower’s first patients. An award-winning Australian documentary film-maker, Mike Hill from Moonshine Agency, met Kopane a few months back and knew that her amazing story had to be told. “Watching a peaceful death of a human being reminds us of a falling star; one of a million lights in a vast sky that flares up for a brief moment only to disappear into the endless night forever.” With these words of Elizabeth Kubler-Ross in mind, realising that Naledi means ‘star’ and listening to the young patients at Sunflower singing “Twinkle Twinkle Little Star”, Hill decided to call the documentary Little Stars.

Kopane was born HIV positive and her mother died of the disease around this time. None of Kopane’s doctors thought she would live past 6, but she did. At 7 she started on ARVs and her health improved dramatically. She did not, however, know her condition. She also suffers from epilepsy and was bullied at school due to her bouts of ill health.  Five doctors told Kopane she wouldn’t live to see her eighteenth birthday. Nonetheless, Kopane continued her studies, enjoying writing, sketching, dress-making and craft work. In 2010 she suffered severe kidney failure and went into a coma for 5 months. When she regained consciousness, her quality of life had slipped away – she found it hard to speak, write and use her hands. Far from her family (and her second family at Sunflower House), Kopane’s will to live was put to the test when she was stuck in a windowless hospital room in ICU. She pulled through and returned home. Kopane also returned to school and graduated.

Today she is 22 years old and encourages others to accept who they are. “Do not judge people with HIV, rather motivate them to live a healthy life,” she says. She adds that she tries to teach others in her position to live not by other people’s opinions, but only to live by God. For more information on Kopane, the documentary or Sunflower, contact Joan Marston at joan.marston@icpcn.co.za.

maricelle@centralmediagroup.co.za