Progeria sufferer and SA’s ‘First Lady’ dies at 18
Special child of SA
WHAT was meant to be a day of celebrations turned into one of mourning for the Hebron-based Phalatse family, which is instead preparing to lay to rest its “First Lady”, Ontlametse.
The 18-year-old drew her last breath a day before the birthday of her mother, Bellone Phalatse, who shares a birthday with President Jacob Zuma.
Ontlametse was born with a rare genetic disorder called progeria which accelerates the ageing process. She died on Tuesday night at the George Mukhari Academic Hospital in Ga-Rankuwa.
According to a message posted on her Facebook page, she had problems breathing and was rushed to the hospital.
“The doctors did everything possible to save her but unfortunately she passed on. She was surrounded by her mother, brother, family members and friends,” the message read.
“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.”
The message indicated that funeral arrangements would be conveyed during the week.
She was one of two girls in South Africa with the disorder and was able to use her circumstances to raise awareness and encourage others, through her motivational talks, to live their best lives.
Her “celebrity” status was such that when she said one of her wishes was to meet the president for her 18th birthday, Zuma cleared his schedule to celebrate the milestone with her. At 18, she lived four years longer than doctors had predicted.
Zuma, in turn, invited her and her mother to spend his birthday with him, which was celebrated yesterday in Kliptown, Soweto.
When The Star visited the home, there was a sombre mood. Tebogo Mofhoa, a member of the Ontlametse Phalatse Trust, said the family were not ready to talk to the media.
PRESIDENT Jacob Zuma said yesterday that he was saddened by the death of Ontlametse Phalatse and described her as a “brave young fighter”.
Phalatse was one of two young South African women living with Progeria, an extremely rare genetic disorder of rapid ageing at a very early age. Doctors did not think she would live to see her 14th birthday but last month, she turned 18 after having finished matric.
She died at George Mukhari Academic Hospital in Ga-Rankuwa, Pretoria, on Tuesday after experiencing breathing difficulties. She was from Hebron, outside Mabopane in Tshwane. Phalatse paid a courtesy call to Zuma on the eve of her 18th birthday last month where he presented her with a birthday cake as well as a bouquet of flowers.
In a statement yesterday, Zuma said he had been touched by meeting her, and said he was impressed by her zest for life.
“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 (so) that they can achieve their goals regardless of any challenges,” Zuma said.
“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.”
Ontlametse’s goal was to be a life coach and motivational speaker.
Zuma, who turned 75 yesterday, had also invited Ontlametse and her mother Bellone Phalatse, with whom he shared his birthday to join him in his celebration. The president committed to build Ontlametse’s family a home and provide her with transport for her special needs as well as improved medical care.
He committed the Jacob G Zuma Foundation to working with the Ontlametse Phalatse Trust, and said he would speak to the relevant government departments as she was a “special child of South Africa”.
“The president remains committed to fulfilling his undertaking to help the family with a house,” the Presidency said.
‘May her spirit inspire others living with disabilities’