South African Ontlametse Phalatse is the first black child with progeria, a rare premature aging disease. The elfish child with massive fame is among the only 80 children in the globe diagnosed with the illness.
And miraculously, she just turned 17 this month despite doctors predicting she would not live up to 13.
The doctors’ reports came when she was just 12 – meaning she had only a year to say her goodbyes. But she broke the set record, making it all the way to 17. The tiny woman calls herself the “first lady” and she tells the world her reason for nicknaming herself the first lady, saying:
‘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?’
Phalatse recently attended her school matriculation few days ago and shared lovely photos on Instagram.
“Thanks to everyone who made this day a success. I look awesome” Awww!
Nobody is really sure about how many kids in the world have the disorder, but indeed, she is the only verified black woman with it.
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.
The fatal genetic condition increases aging process rapidly like eight times faster than normal and thus causes a child to have a much shorter life span than children their age.
Such children usually die from a heart attack or stroke. Ontlametse Phalatse’s mother, Bellon Phalatse, says her baby was born appearing normal, only to find out a few months later that she wasn’t. The baby, she says, suffered persistent rashes and by the time she was three months old Phalatse thought she had a skin disease.
However, before she could celebrate her first birthday, her hair started falling, her nails turned abnormal, and the skin problems continued. They began visiting different hospitals and as she aged prematurely, her father dumped the family when Ontlametse turned three.
Ontlametse Phalatse started school at six and even though she was always sick, she proved a bright pupil. She has suffered stigma as well as bullying from classmates, teachers and others who believed her appearance was 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 not until two years ago that a doctor friend suggested to her mother to get Ontlametse tested for progeria, and gave her a book and pictures depicting the disorder.
How Do People Who Suffer Ontlametse Phalatse’s Illness Look?
Children with progeria look strikingly alike, no matter their ethnic backgrounds: tiny and with big bald heads, eyes that bulge a little, gnarled hands.
They suffer from thinning skin which has a network of blue veins showing on the heads of white children. Mrs. Phalatse said she knew instantly that her daughter had the same disease, and a doctor confirmed the diagnosis. She and mom Bella flew to the U.S. on school holidays funded by the Progeria Research Foundation at Children’s Hospital Boston, for advanced treatment.
The disease 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.