JOHANNESBURG — The elfin child with the big personality and bright smile calls herself “the first lady” and dreams of the future. But doctors say 12-year-old Ontlametse Phalatse has only, perhaps, another 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 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.
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 5-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. “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 3 months old Phalatse thought she had a skin disease.
Before Ontlametse celebrated her first birthday “her hair was falling, her nails weren’t normal, the skin problems, we were going up and down to the doctors.”
As the child aged prematurely, her father abandoned the family when Ontlametse was 3 years old.
Despite her frequent illnesses, Ontlametse enrolled in school at 6 and proved a bright pupil. But she was often scorned by classmates, teachers and others who thought she was so small and skinny because she had AIDS. South Africa has the highest number of people living with AIDS of any country but the disease still carries a terrible social stigma.
“It was horrible, I don’t know how to explain” what we went through, Phalatse said.
It was not until two years ago that a doctor friend suggested she have Ontlametse tested for progeria, and brought her a book about the disease.