Bright star until the end
Young At Heart | Progeria girl lived with a deadly disease, but did so with unique zest and humour
HOURS before she died, Ontlametse Phalatse went for her final fitting for the dress she was to wear to President Jacob Zuma’s birthday party the following day.
She wanted to be the best-dressed guest and was excited about mingling with celebrities and politicians.
Eighteen-year-old Ontlametse — who on Tuesday lost her battle with progeria, a rare genetic condition that causes one’s body to age fast — enjoyed mixing with celebrities and had a list of people she wanted to meet. She had met most on her list, including musicians Lira and Vusi Mahlasela.
Her aunt, Maureen Moropa, on Friday told with a sad smile how the teenager had once said to her: “You know, as a celebrity, I have to meet other celebrities.”
Ontlametse’s mother, Bellon Phalatse, was too distraught to speak to the Sunday Times this week, but Moropa said Ontlametse had been like any other teenager in that she liked to have fun. “She was not shy at all. She had accepted her condition, far more than us.”
She enjoyed giving motivational talks. “If you had an event and asked her, she would come. She enjoyed it. She did not prepare anything and said: ‘Prepared speeches are never good.’ ”
Moropa said Ontlametse wanted to be independent and would make sure no one felt sorry for her. Her optimism and realistic nature always amazed those around her.
“She acted like any other person. She would say: ‘Take me as a person. Ontlametse here, progeria there. Do not mix the two.’ ”
Moropa recalled when Ontlametse fell at school and was admitted to hospital. “Whenever I went to visit I would find her on other beds, cheering up the sick.”
Ontlametse, who celebrated her 18th birthday on March 25 by meeting Zuma at his official residence, was initially not expected to live beyond the age of 13.
She called herself “the first lady” because she was the first black child in the world diagnosed with progeria. She had requested the meeting with Zuma, at which he presented her with a bouquet and birthday cake.
There had been a sign on Tuesday that Ontlametse’s “time had come”, Moropa said. “Her death was sudden. She had not been sick, this took us by surprise. Not once [had she ever] kneeled down, but that afternoon Ontlametse kneeled from breathing difficulties.”
She was taken to the Hebron clinic, then to hospital. “Her heart stopped three times and the doctors resuscitated her until they could do nothing more.” Moropa said the sight of one doctor after another leaving Ontlametse’s bedside made her realise there was no hope.
On Friday afternoon, when the Sunday Times visited the teen’s home in Pretoria, mourners were paying their last respects. Melancholy filled the room as Moropa recalled how, days before she died, Ontlametse had given her mother a watch as an early birthday present.
Moropa said Ontlametse had looked like any other child when she was born. But by the time she was a year old, her lack of growth had become a concern. Doctors did not pick up that she had progeria, which affects one in four million people. Instead, she was diagnosed with a skin condition.
After she was correctly diagnosed, the family constantly worried that her condition would worsen.
“She was told she would not live until nine, then 13, hence we could not relax, despite her positive outlook on life,” Moropa said. “Miracles continued until her last day.”
Ontlametse matriculated from the Dominican Convent School in Johannesburg last year.
“She had confessed to me that she only pretended to be interested in studying psychology at university to give her mother hope,” Moropa said.
She wanted to do a crash course in motivational speaking so she could start working soon, as she was not sure she would live long enough to complete a university degree.
A memorial service will be held on Wednesday and Ontlametse will be buried on Friday.
❛ Whenever I went to visit I would find her on other beds, cheering up the sick