12-year-old Ontlametse Phalatse is the first black child living with the rare ageing disease- Progeria. Though the waiflike child calls herself "the first lady" and dreams of the future she only has a couple of years to live.
"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 challenges.
Ontlametse is the only living black child diagnosed with Progeria, a rare and fatal genetic condition that accelerates the aging process, the Progeria Research Foundation said. Progeria tends to affect one in a million kids.
The young girl from South Africa has dreams to be a psychologist in future that may never come. 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.”
There have been cases of other black children ever diagnosed with the disease, who died in the United States and the Netherlands. The Progeria Research Foundation's Executive Director, Audrey Gordon, says the only Africans diagnosed with the disease were found in South Africa and only two survive— Ontlametse and a 5-year-old white girl and that is probably because the country is known to offer superior medical care.
Although, it is not known for sure how many children in the world have it, experts estimate that between 200 and 250 children live with Progeria at any one time.
The Progeria Research Foundation in its two-year campaign to find the cases of the disease says the number of children diagnosed around the world has soared from 54 to 80 on five continents, showing 48 percent increase.
Meanwhile, Ontlametse continues to suffer from Progeria which is making her different from her kids of her age. Ontlametse and her mom travel to the United States to participate in the research funded by the Progeria Research Foundation at Children's Hospital Boston. This provides her with the latest drugs to battle the deadly disease.
Progeria is caused by mutation in the gene called LMNA, which produces the Lamin A protein. Researchers believe the defective Lamin A protein makes the nucleus unstable, leading to the process of premature aging.
Children usually begin to display characteristics of the disease including hip dislocation, stiff joints, heart disease and stroke at around 18 to 24 months. Children with Progeria do not survive very long and they usually die between the ages of 8-21.