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When my son Sakhiwo was born, on 8 May 2005, he had jaundice. Weeks later, it still would not clear. The joys of childbirth quickly turned into anguish when we spent a long time seeing doctors, and with no end of his suffering in sight. When he was six weeks old, after my late husband and I had been seeing paediatrician after paediatrician, they confirmed the worst. It was not just ordinary jaundice, but something more sinister. Sakhiwo was diagnosed with Biliary Atresia.

Biliary Atresia is a serious, rare disease of the liver that affects newborn babies. It is the injury or loss (atresia) of the bile ducts that drain bile from the liver. Atresia results in bile remaining in the liver, causing scarring and loss of liver tissue. Although its cause is unknown, there are treatments which are only partially successful – which means liver transplants are inevitable.

Can you imagine having your first child; then an illness like this strikes him? A life-threatening illness.

Sakhiwo eventually had surgery to help with bile drainage, and this was a success. In order to keep his health stable, taking medication has become part of his daily life. The initial diagnosis was that he would not make it to the age of five. My boy is now six years old and he is stable – and very energetic! He behaves like any other happy, healthy child. I don’t know when, but the time will come when he will need a liver transplant.

State-of-the-art health facilities, let alone paediatric facilities, are rare. As a parent, having a sick child who I have to be separated from, and with only limited contact is always painful. During a hospital stay you want your child to be comfortable – often, I’ve been with Sakhiwo in hospitals where conditions were far from comfortable. Imagine your child being transferred to a hospital far away, and you are not able to see them every day?

I spent most of my married family life in hospitals, and sharing and helping others in similar situations is what drives me now. I vow to use my position to build advocacy around these health issues, and contribute to positively changing people’s lives. This is why I have established the Ntandoyesizwe Foundation, dedicated to creating awareness of rare illnesses that affect children, particularly Biliary Atresia, and cancer, to which I lost my husband in 2010.

Early detection and treatment can save lives. We need to educate and support one another, to demystify the issues around these diseases. I acknowledge the great work that has been done and I wish to add my little voice to the chorus, to shine my light in the darkest corners of the country. Together, we can make a difference to the lives of the children of Africa.

Princess Ntandoyesizwe Zulu-Moilwa Mother of Sakhiwo, and Patron of the Nelson Mandela Children’s Hospital