Johannesburg – In her dying moments, Ontlametse Phalatse told the taxi driver that she was struggling to breathe, and that he should please hurry home.
“Ou bhuti, I am struggling to breathe,” she said cowering into a kneeling position.
She had gone to town with her mom, Bella Phalatse, to fetch a tailor-made outfit that she was supposed to wear on Wednesday night at President Jacob Zuma’s 75th birthday party, where she was a special guest.
Unfortunately, Phalatse did not make it to the celebrations. She succumbed to lung failure.
Her heart had already stopped twice and there was nothing more doctors could do when her heart stopped for the third time on Tuesday night.
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Phalatse was one of two South Africans who suffered from progeria, a rare disease which causes premature ageing.
She was the only black person in the world to suffer from the rare disease.
Sitting under a guava tree at their modest home in Hebron in the North West province, her aunt Maureen Moropa, who shared a special relationship with the 18-year-old, said when Phalatse was born she looked okay, like any other baby.
In the days leading to Phalatse’s birth her mother, Bella Phalatse, frequented Odi District Hospital in Tsebe, North West because she was suffering from high blood pressure.
“She stayed at the hospital for some time before giving birth. The day she gave birth the baby looked okay, she even grew up to use a walking ring. We did not immediately know that the child was suffering from progeria.”
‘She was not growing well’
Initially, the family was told that Phalatse had a skin problem.
“It went on and on. When I asked her mother, she said she noticed a small mark on the skin and then her skin became dark in complexion but she was still a bubbly person.”
Phalatse never had speech or walking problems.
“We discovered between 2008 and 2010 that she was not normal, she was not growing well.”
The family was devastated as they had never heard of such a disease and no one in the family had it prior to Phalatse.
Phalatse’s mother went into a state of depression after doctors finally diagnosed her daughter with the rare disease.
“She was a weak child, although she has always been outspoken, she was not a healthy child. It was frustrating, if it was not diarrhoea, it would be flu, she was suffering and we were always diagnosing her with different illnesses.”
She was so tiny that her mother had to carry her school bags for her because they were too heavy, Moropa said.
Phalatse attended Lerato Primary School and matriculated at St Dominican Convent School in Johannesburg in 2016.
While growing up she had dreams of becoming a psychologist because she wanted to help people.
‘I must enjoy everything to the last’
“She wanted to help people suffering from all sorts of problems, not just progeria. She used to say people are hiding in their houses, she wanted to come out and say, ‘Guys look at me, I can be whatever’.”
Moropa chuckles when she recalls how Phalatse changed her mind wanting to then become a motivational speaker.
“Last year after she matriculated we spoke about school, I reminded her that she wanted to be a psychologist and I asked her if she had applied and she said no. I told her to go to UNISA and she said ‘Nahhh aunty, I am not going there, sorry’.
“She said remember, aunty, that my lifespan is very short. I must enjoy everything to the last. One thing about Ontlametse is that she knew and accepted that she would not live long.”
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When she was 12, Moropa asked Phalatse if she was okay, and with attitude she replied, “You look depressed, I am not going to die, doctors cannot tell me when I am going to die. They will not dictate when I am going to die, I am going to live like any other person, God will decide.”
Phalatse remained positive and never showed signs of depression throughout her life.
“She told me that she wanted to be a motivational speaker, she no longer wanted to be a psychologist. She said there were crash courses. After qualifying to be a motivational speaker she would buy herself a car, build a home for her mom and enjoy life to the fullest so that when she died, she would have experienced life.”
Moropa said last year her niece dislocated her shoulder and started using crutches. “She only started using them last year; she was walking on her own.
“I went to visit her in her ward and she was not there. I asked her why she was up and down and she said, ‘Aunty, I am going to check all the sick people’. She said at least she could walk. She said as long as she could walk, she would keep walking.
Ontlametse ‘made peace with it’
“She said the problem was that she was not sick, she was just too old. She said her real age was 70 years and she told me that old people died because there were holes in their hearts.”
Phalatse joked with her aunt that doctors had seen her heart and wanted to fill it with a balloon “so that she could add years to her life but it was too risky”.
“She said she told doctors that they should rather do it the natural way and let God decide, do not rush things,” said Phalatse.
Moropa said over the years the family struggled to accept Phalatse’s condition but the brilliant teen herself “had made peace with it”.
“She would say, ‘Aunty, you know what, you are worried about me and what I like about the concern is that it does not discourage me, it does not depress me. Do not stress yourself, I am going to live my life to the fullest. I am not going to allow you to depress me’.”
Moropa said Phalatse recently asked her if she wanted to accompany her to see doctors in America at the Progeria Research Foundation because her mom was not well.
“I asked her, why me? I told her that I was a temporary teacher and I might not have a job when I come back.”
She said Phalatse was scheduled to go to the US in June for further treatment.
“They were doing trials and she has been going there since they diagnosed her with the disease. She was the only black child with progeria in the world.”
Moropa said Phalatse was not supposed to die and she felt bad that on Tuesday when she passed on, she did not go into the house before going to work.
‘First lady of South Africa’
“I came to the house on Tuesday morning to collect things, but I did not go into the house because I was in a hurry. I was not worried about her because I knew she was fine.”
In the afternoon, Moropa did not go back to the house.
“That morning we had an argument because her mother was supposed to go to town and she wanted to come with me.”
Phalatse and her mom went to town on Tuesday morning to see a tailor who was making a special outfit for her because she was a special guest at President Jacob Zuma’s birthday celebration in Soweto on Wednesday night.
“They went to town and when she got there she instructed the designer to make sure that no one should dress better than her.”
Phalatse, according to Moropa, then told the designer that she wanted to chop and change her outfit.
“She told the tailor to remember that there would be very important guests such as doctors at the celebration and she did not want those doctors to look better than her. She wanted to be the first lady of South Africa.”
Phalatse and her mom were in a taxi back home when she suddenly experienced difficulty breathing.
“In the taxi, she said ‘Ou bhuti, I am finding it difficult to breathe’. Then she went on her knees in the taxi, and remember she was skinny and tiny, and what saddens me is that I imagine her on her knees in the taxi. That is how tough it was.”
Moropa said luckily there was already a car parked outside the house to take her to the clinic.
Team of doctors
“At the clinic, they tried to give her oxygen and then they referred her to Dr George Mukhari Hospital in Ga-Rankuwa.”
Moropa said when she got word that Phalatse was in hospital she rushed there.
“I became confused; I went to my house and waited for my husband and I told him that Ontlametse is not well, can we go to the hospital.”
She said when they arrived at the hospital they were denied access.
“I finally forced my way in and I sat next to the consulting room for a while. I remember seeing a team of close to nine doctors around her and I was worried.”
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She said it was a normal sight because Phalatse had always had a team of doctors working on her when she fell ill.
“I told my cousin that doctors are leaving one by one from her room, does he still think she is alive? He said Ontlametse was not okay at the clinic.
“It was so obvious but until we are told, then it is final.”
Moropa said she saw an elderly Indian doctor leave the room and head straight for the tap.
“He washed his face and scrubbed his hands and I thought to myself this doctor was sweating. I could see what had happened but I still wanted to be told.
‘She was my big sister’
“They took us to a private room and told us that Ontlametse’s heart stopped twice, they brought her back twice but the third time her heart said no…”
Phalatse died at around 21:30 on Tuesday night.
She said Phalatse’s mother was strong when they broke the news to her.
“She asked if she could see the body. She was no more but she was still the Ontlametse we knew.”
Moropa said she would miss the bubbly, straightforward talking teen.
“She had attitude, was courageous and positive. She never wanted a pity party, she was strong. She felt like she was normal because she could talk and walk like everybody.”
Phalatse used to tell her aunt that her disease and her personality were “two separate items”.
“She was brilliant. They said she aged six times than her age so I used to tell her that she was my big sister.”
Moropa said Phalatse touched South Africans because she was not shy about her condition.
“She had the oomph to talk. Which other person can just say they want to meet the president?”
Loved and defended Zuma
Phalatse loved Zuma and defended him saying, “The media can say this and that about the president, I don’t care, he is still the president, you voted for him. Am I wrong?”
The opportunity to meet and spend time with Zuma before she died was on her bucket list.
“She told me that I could not go because I was too old.”
Moropa said when Phalatse met journalist Debora Patta she ended up interviewing Patta.
“We are going to miss her terribly.”
A memorial service will be held for Phalatse on Wednesday, at the Hebron College, Manotsi High School.
The funeral will be at the family’s home on Friday.
Phalatse’s mother Bella and 26-year-old brother were too traumatised to speak to News24.
President Jacob Zuma presented the family with a car on Wednesday and promised to build the family a house.
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