Pretoria - ‘First Lady” Ontlametse Phalatse and “her Number 1” President Jacob Zuma smiled, laughed and chatted like old friends.
The two met at the presidential home Mahlamba Ndlopfu in Pretoria on Thursday afternoon, after relentless attempts by the Ontlametse Trust.
The elfin child, diagnosed with pre-ageing disease progeria, had mentioned that meeting Zuma was on her bucket list this year.
Ontlametse, of Hebron in the city, brought a big personality and bright smiles to the meeting. She explained that she was the First Lady because she was the first (recorded) black child with the progeria disorder.
“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?”
Ontlametse was diagnosed with the rare, fatal genetic condition that accelerates the ageing process when she was a small girl.
It was in 2009, that she was diagnosed and told she would not live beyond the age of 13.
The disorder leaves those suffering from it unable to reach their mid teens and very rarely reaching their 20s. It is a genetic condition that occurs as a new mutation, and is rarely inherited, as carriers usually do not live to reproduce.
Zuma was visibly moved during the “birthday meeting”, where they shared cake and drank together.
He said her story was one of hope and triumph. “She is so bubbly and articulate, a clear indication that she doesn’t feel pity for herself. I must say I am really inspired by her attitude and fighting spirit,” said Zuma.
The First Lady on the other hand said with her infectious laugh: “Well, I am excited that I am really here, at the same time nervous.
“Meeting the president has always been on my bucket list, so now I can finally tick it off my list of things to do.”
Meeting the president was on her list of things to do before she turned 18. And when she reaches that age on Saturday, she will be celebrating a milestone which no one thought she would reach.
The president helps Ontlametse cut her birthday cake. Picture: Oupa Mokoena
“I don’t care what people say about me,” she said, adding that she wanted to become a psychologist to help people with their problems.
She recently matriculated and made her family proud, receiving huge accolades from across the country and people who wondered if she would live a normal life.
Zuma presented her with a bouquet of flowers and a huge cake in addition to the delicacies. He vowed that his foundation would look into some of her needs. A member of the Ontlametse Trust, Bonginkosi Ngubane, gave a heart-warming speech about how Ontlametse was celebrated and treated like a celebrity, but not really helped by the public.
Picture: Oupa Mokoena
“People take photos with her and want to hang around her to gain status but don’t help towards her health,” he said.
Ngubane said to date the foundation only had R31 000 which was barely enough to cover her medical expenses. “We appreciate the attention because it shows support, but this beautiful young girl is also need of financial assistance. It’s not obliged, but asked for,” said Ngubane. Some of the young lady’s needs are a safe and secure house for her and her mother Bellon Phalatse. They live in an unsound house in Hebron, which they deem unsafe. The president promised to organise reliable transport for Ontlametse, who is constantly visiting doctors because of her condition.
Picture: Oupa Mokoena
When Ontlametse arrived to meet the president she walked with crutches because of a broken hip she suffered as a result of public transport accident. She relies on taxis to go for her medical check ups. “My foundation will establish a communication line with Ontlametse Trust to meet the needs of this young beautiful girl. Her needs won’t be reached overnight but they will be reached nonetheless,” said Zuma.
She said she wanted to be a life coach and motivational speaker.
Ontlametse told Zuma said she was in and out of hospital at least three months before her year-end examination.