Ontlametse Phalatse‚ the first black child suffering from the ageing disorder Progeria, has passed away. The 18-year-old died on Tuesday night at Dr George Mukhari Academic Hospital in Ga-Rankuwa‚ outside Pretoria‚ eNCA reported.
Phalatse was one of two South African girls living with Progeria‚ a rare genetic condition that causes rapid ageing. She described herself as “the first lady” after she became the first black child diagnosed with Progeria.
Celebrating her 18th birthday on 25 March, Ontlametse had also met Jacob Zuma at his official residence where Zuma presented the teen with a bouquet of flowers and a birthday cake.
The presidency said at the time that the Jacob G Zuma Foundation would work with the Ontlametse Phalatse Trust to grant her other wishes‚ which included a home‚ transport and improved medical care.
“Our lives were most touched by meeting Ontlametse last month. She was very special indeed. I was impressed by her sharp intellect‚ warm personality‚ brilliant ideas and her determination to use her condition to motivate others that they can achieve their goals regardless of any challenges‚” Zuma said in a statement.
“A brave young fighter has fallen. May her spirit inspire all others living with disabilities or facing any difficulty‚ to soldier on as she did and live life to the fullest. We are really proud of her. We wish to convey our utmost condolences to her mother‚ her whole family and the Ontlametse Phalatse Trust for this sad loss. May her soul rest in eternal peace.
“The President remains committed to fulfilling his undertaking to help the family with a house according to Ontlametse’s wishes.”
While she looked normal at birth, Before Ontlametse celebrated her first birthday her hair was falling, her nails weren’t normal, the skin problems, we were going up and down to the doctors. It was not till 2009 she was diagnosed with Progeria.
The diagnosis came with the news that most children with the disease die at 13. But it also brought a better understanding of what they can do to try to prolong Ontlametse’s life, and it has brought her the specialized care she needs.
Each school holiday, Ontlametse and her mom fly to the United States, where she participates in research funded by the Progeria Research Foundation at Children’s Hospital Boston.
An inspirational figure and a bundle of positivity, Ontlametse outlived doctors’ predictions by four years.