First black child diagnosed with rare “Benjamin Button” ageing disease is South African

First black child diagnosed with rare “Benjamin Button” ageing disease is South African

September 9th, 2011 by Zanele Mji



This is twelve year-old Ontlametse Phalatse and her mother Bellon.  She’s the first black child in history to be disgnosed with the extremely rare condition Progeria, which accelerates the body’s ageing process.

It’s the genetic condition that took the life of Die Antwoord’s DJ $olarize (Leon Botha) earlier this year.  At 26 Botha was the world’s oldest Progeria sufferer.  The condition is said to be the inspiration behind the movie “The Curious Case of Benjamin Button” where the main character is born an old man.

Ontlametse calls herself the First Lady because, “I’m the first black child with this disease…. Which other black child do you know with this disease?” She asked a journalist.  Living in Gauteng, Ontlametse is one of only two African children diagnosed with the disease.  The other is a five year-old white girl also in South Africa.

The vast majority of Progeria sufferers pass away by age 21, most of them around 13.  Still, Ontlametse wishes to be a psychologist so that she can help other people to accept themselves the way she has.  She admits that classmates can be mean, but she doesn’t care what people say about her.

Ontlametse already suffers from hair loss, arthritis and other complications of the condition, and is flown twice-a-year to Boston for medication and research by the Progeria Research Foundation.  The Foundation was instrumental in the 2003 discovery of the Progeria Gene and are now hoping to work towards finding a cure