She was expected to speak at the celebration in Soweto but instead, Zuma learnt of her sudden passing.
Zuma promised that his foundation would build Phalatse’s family a home and he presented the family with a car on Wednesday night, something that Phalatse had asked Zuma to do.
News24 visited the family on Friday.
Many people, including South African rapper Stone and actor Peter Moruakgomo, had gathered at the house to pay their respects to the family.
Moropa, whom she had a close relationship with, told News24 that the funeral service would be held at the house next Friday.
Someone who loved Phalatse dearly was Dr Babalwa kaMabhoza, who was also at the house on Friday.
She said she met Phalatse last year when she visited the Medunsa Oral Health Centre at Sefako Makgatho Health Sciences University (SMU) in Pretoria, to do a tooth extraction.
“We work with students and there were complications so I had to take over and it was not a pleasant way of meeting because when she left it was not a pleasant because she could not even say goodbye because of the procedure but I asked the mum so that I could do a follow-up.”
Unfortunately, said KaMabhoza, she lost Ontlametse’s mum, Bella Phalatse’s number.
She said Phalatse left a good impression in her heart and soul. “I am a highly spiritual person and because we were both differently abled.”
KaMabhoza, cannot see with her right eye and wears a patch.
“I sent out a search party and I found the family again last Christmas.”
She said her relationship with Phalatse grew from being a friend to being an aunt and sometimes a mother.
KaMabhoza said she was roped in as a member of the Ontlametse Phalatse Trust, which was started in 2012, by a group of gentlemen called Agang who were looking to help South Africans.
She said she would remember Phalatse as the “first lady” because she was the only black person with progeria in the world.
“There are a lot of lessons that I still have to untangle. She has taught me to live in the now and here. She continuously said some of you are living as if you are going to live forever.”
She said, “Another lesson she taught me was that now is important”.
Another, she said, was that “to dance in the midst of the storm. She would tell me: ‘Look at me I have done a lot of things in my life and you need to remember that there are a lot of things that I go through’.”
‘I still laugh’
In her last days, Phalatse would tell KaMabhoza that she was fine.
“She used to say, I have pain because my body inside is like that of an old person but I still laugh and enjoy life.”
KaMabhoza said Phalatse believed that every human being had abilities that they did not tap into.
“She wanted to touch the lives of every South African from a small child to a granny. Those are things that stuck with me.”
She said Phalatse was very quick in dismissing people, even herself.
“She was a highly spiritual person. I told her that we all had problems but she was a tiny giant that had gone over a big challenge. She said to me that it was one of those things that the majority of you could not comprehend.”
KaMabhoza said if people could go through life and become like Phalatse, then “there was something special about you”.
“Ontlametse had learnt to live beyond the physical life. She was a giant, a force and had this energy that I did not understand.”
KaMabhoza said she was left with lessons and questions since Phalatse’s death.
“What the caterpillar thought was the end of the road, the master thought it was a butterfly.”
She said it was a dark and sad time for those who knew, loved and were touched by Phalatse.
“She has taught us a lot of things and I hope everyone will use the lessons as a transformation spin.”
She said South Africans, particularly those who had a physical encounter with Phalatse, had a responsibility to ensure that her spirit lived on.
“How does an icon of her nature live on? Even if we were to erect a bust, it must not sit there and gather dust. It must emit energy and we must say she lives on so we have a huge responsibility to ensure that that happened.”
KaMabhoza said Phalatse had touched the lives of so many South Africans who in turn made sure that she lived the life that she deserved.
"If we come together and use her as one form of unity it would be amazing. We all have homework to do.”
‘Epitome of life’
She said Phalatse was a soul that vibrated at a high frequency.
“We need to keep it at that level or move it higher.”
KaMabhoza said the family welcomed all the help or any donation from the country that would assist Phalatse’s mother and brother live a comfortable life.
“We need to remember that she has a mother who is a giant herself, imagine having to bring up a child like Onltametse, a child that when you walk around, you have to have the courage to answer questions. I am sure there were people who looked at her and said what is this?”
She said she does not think Phalatse’s mom knows how special her daughter was.
“She was bigger than life itself. She was the epitome of life.”
KaMabhoza said Phalatse’s mum had to stop working to look after her daughter.
She said the trust will regroup and makes sure that all the promises that had been made to the family were fulfilled, including that made by President Jacob Zuma, which was to build the family a house and buy them a car.