Ontlametse Phalatse calls herself ‘First Lady’ because she is the first (recorded) black child with Progeria disorder.
She was born like every other child and was also looking “normal” until her mother Bellon discovered something was wrong as she grew up.
When Phalatse clocked three months old, her mother had already treated her severally of skin rashes – but as time went on, she found that there was more to it than a skin disease.
In fact, by the time, she celebrated her first birthday, she was already a well-known patient in hospitals, as her hair continued to fall while her nails were abnormal. It became evident that she was aging fast and prematurely.
Against all odds, she finally made it to school at 6 years and was mocked by her peers and teachers, who thought she had AIDS.
Doctors had told her mother in 2009 that she will not to live beyond the age of 13, but Ontlametse has apparently proved them all, as she will be celebrating her 18th birthday on Saturday.
On Thursday, she met with president Jacob Zuma at his home at his Mahlamba Ndlopfu Presidential House in the Bryntirion Estate in Pretoria as part of her bucket list of wishes.
Ontlametse’s day turned more colourful and graceful as he surprised her with a basket filled with flowers and a big cake as a pre-birthday celebration. Zuma even helped her cut her cake, they also drank and ate together to the excitement of other guests.
Zuma said during their private conversation, they discussed what her interests are.
He added: “One of her wishes was to have this day (with him). We indeed had an encounter today and I am honoured we had a very nice discussion. I said let met me organize a cake, even if the birthday is not necessarily today.”
She was accompanied by her mother, Bellon Phalatse, and Advocate Bonginkosi Ngubane from the Ontlametse Phalatse Trust.
Speaking also, Ontlametse said she was very honoured to have spent time with the president.
She said: “We had a lovely talk, chat, a private one, and I am very happy about all the things that we discussed and I hope it comes true. I am really honoured that he bought me a cake for my birthday and I am excited to have a slice of it.
“I am out of words, I was so nervous, but he (the president) is a lovely person and easy to communicate with and is down to earth. May God bless him.”
BuzzSouthAfrica understands that Ontlametse’s second biggest wish is to get a family car and house.
In response, President Zuma promised to make her wishes a reality, adding that he will talk to the department of human settlements or social development to look into the matter.
Zuma added that his foundation would also work with Ontlametse’s trust in helping with her trips to the United States for medical research.
To date, Ontlametse’s foundation only has R31 000 which was barely enough to cover her medical expenses.
The elfin child with the big personality and bright smile just matriculated from the high school and hopes to be a psychologist, a life coach and a motivational speaker someday.
According to the Progeria Research Foundation, Ontlametse is the first black child diagnosed with progeria, a rare and fatal genetic condition that accelerates the aging process.
The foundation’s executive director, Audrey Gordon, revealed only two Africans have been diagnosed and both live in South Africa — Ontlametse Phalatse and a 5-year-old white girl.
The number of children diagnosed around the world is said to have soared from 48 to 80 on five continents.