Ntlami lived her life to the full
‘First Lady’ dies two weeks after her 18th birthday and meeting with Zuma
Born: March 25 1999
Died: April 12 2017
Funeral: Yet to be confirmed
Ontlametse Phalatse, the only black SA girl who was living with the rare genetic disorder progeria, which leads to premature aging, died yesterday.
Expected by doctors to live only until the age of 14, Phalatse last month celebrated her 18th birthday. She was the only known black female born with this disease.
According to an update by her family on her Facebook page yesterday, Phalatse experienced breathing difficulties on Tuesday and was rushed to Hebron Clinic before being referred to Dr George Mukhari Academic Hospital in GaRankuwa.
Phalatse, affectionately known as “Tsontso at her home village of Hebron in North West, was born on March 25 1999.
She seemed normal until she was a toddler, when her mother noticed that she was developing a skin condition. She was diagnosed with Hutchinson-Gilford Progeria Syndrome, which is an extremely rare genetic condition.
Phalatse was born looking “normal”, but later on, her mother Bellon discovered something was wrong. By the time she was three months old, she was already having constant rashes on her skin and her mother thought she had a skin disease.
Before she celebrated her first birthday, her hair was falling and her nails weren’t normal. Her parents were going from doctor to doctor.
Her father abandoned her mother before she celebrated her third birthday, as she was ageing prematurely.
She was enrolled in school at six years old, but that came with scornful remarks from classmates and teachers who thought she had Aids. People living with Aids were always being discriminated against at the time. It did not stop her as she proved to be a bright pupil.
In 2009, a doctor friend suggested she have Phalatse tested for progeria, and brought her a book about the disease. She was later diagnosed of the disorder. Phalatse had a bubbly and positive personality, and she did not allow her condition to bring her down.
She called herself “First Lady” because she was the first [recorded] black child with the disorder. The disorder is believed to have inspired Brad Pitt’s movie The Curious Case of Benjamin Button, in which he is born an old man and ages backwards.
“It is with great sadness to inform you of the passing of our first lady, Ontlametse ‘Ntlami’ Phalatse. She experienced breathing difficulties yesterday (Tuesday) and was rushed to Hebron Clinic, then she was transferred to Dr George Mukhari,” read a statement on her Facebook.
“Our hearts are filled with pain and sadness, but Ontlametse as we know her would want us to carry on with her courageous spirit. We will miss you sorely, Tsontso, our first lady. May you find eternal peace among the angels.”
She was a bright young woman who passed matric despite her condition. Phalatse was in and out of hospital for three months before her yearend examinations, this time with heart complications.
Phalatse celebrated her birthday on March 25, and two days before that fulfilled her dream of meeting President Jacob Zuma.
The Progeria Research Foundation (PRF) says only two Africans have been diagnosed with progeria and they both live in SA – Phalatse and a five-year-old white girl. PRF says the number of children diagnosed with the disorder around the world has soared from 48 to 80 on five continents.