Meet the brave Ontlametse who is the first black child ever diagnosed with fatal 'Benjamin Button' disorder rapidly aging her

Ontlametse Phalatse lives in South Africa with her mother and dreams of being a psychologist. Her father left when she was 3 and she and her mother live on assistance.

Flies to Boston twice a year for treatment thanks to a charitable foundation. Progeria sufferers rarely live past 21.

The elfin child with the big personality and bright smile calls herself 'the first lady' and dreams of the future. But doctors say 17-year-old Ontlametse Phalatse has only another couple of years to live.

Ontlametse six years ago 

Ontlamese Phalase  with  South Africa President Jacob Zuma

Ontlametse six years ago 

'I call myself a first lady because I'm the first black child with this disease ... Which other black child do you know with this disease?' she challenged.

Ontlametse is the first black child diagnosed with progeria, a rare and fatal genetic condition that accelerates the aging process, the Progeria Research Foundation said.

The disorder is said to have inspired the Brad Pitt movie The Curious Case of Benjamin Button, in which he is born an old man and ages backwards.

Nobody knows how many kids in the world have it.

In a two-year campaign to identify them, the Progeria Research Foundation says the number of children diagnosed around the world has soared from 48 to 80 on five continents.

The foundation's executive director, Audrey Gordon, says only two Africans have been diagnosed and both live in South Africa — Ontlametse and a 11-year-old white girl. That is probably because South Africa, an economic powerhouse, offers some of the best medical care on the continent.

Gordon says there are several black holes on the map in her office studded with colored tacks where they have found children living with progeria.

Ontlametse and mum six years ago 

'We know that there are children (with progeria) in Africa, in China and Russia, but we just can't seem to get to them,' she said in a telephone interview from the foundation's office in Peabody, Massachusetts.

Ontlametse's mother, Bellon Phalatse, says her baby was born looking normal but that she realized early on that something was wrong. The baby suffered constant rashes and by the time she was three months old Phalatse thought she had a skin disease.

'I would like to be a psychologist,' she says, 'so that I can work on the problems of other people and so that they can accept the way that they are because they can see that I accept the way I am.'

That she would live that long would require a miracle. Children with progeria die almost exclusively from heart disease between the ages of 8 and 21, commonly suffering high blood pressure, strokes, angina, enlarged heart and heart failure.

Gordon said research into progeria has had remarkable success since her family founded the foundation in 1999, after her nephew was diagnosed with the disease.

In 2003, the foundation was instrumental in the discovery of the progeria gene. Now they hope it can help provide answers about the ordinary aging process and cardiovascular disease.

 Daily mail