Meet the woman who helped diagnose Ontlametse with progeria

2017-04-22 08:12
Ontlametse Phalatse (Facebook)

Ontlametse Phalatse (Facebook)

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Johannesburg – After seeing a child who appeared to have the same rare disease as her neighbour’s child, Tebogo Mothoa, gave up her comfortable life in London, left her husband, packed her bags and returned to South Africa with her children.

On television she had seen a child named Haley, who had progeria, a rare disease which causes rapid ageing. Haley presented the same symptoms as Ontlametse Phalatse, her neighbour’s child.

After failing to convince her childhood friend, Phalatse’s mother Bella, over the phone that her child had progeria, she returned to South Africa in 2008 to help the family.

At Phalatse’s funeral in Hebron, North West, on Friday, Mothoa she said she grew up with Bella and is godmother to Phalatse’s brother Tshimologo.

The 18 year-old, who was one of two known South Africans with progeria, died of lung failure on Tuesday, April 11, a day before her mother and President Jacob Zuma’s 75th birthday.

“In 2008, I was living in London and there was a programme where there was a child called Haley who had progeria. I thought to myself she looks exactly like Ontlametse.

“I called Bella and told her that I knew what was wrong with Ontlametse. I did not know what to do, but I needed to do something.”

Bella told Mothoa she did not know who to approach about Phalatse’s condition.

“I abandoned my life, I left my husband, I took my children, packed my bags and came back South Africa,” Mothoa said.

She showed Phalatse and her family pictures of Haley.

Only in textbooks

“I showed Ontlametse and she was ecstatic. She said ‘she looks like me, what does she have?’ I had to do that because I know the pain of a mother not knowing what is wrong with her child.”

Mothoa called a hospital and spoke to a geneticist who told her there was no child suffering from progeria in South Africa.

Mothoa and Bella took Phalatse to Dr George Mukhari Hospital in Ga-Rankuwa. Doctors were both fascinated and confused.

“They said they had never seen this in real life. They had only seen it in textbooks.”

When Bella first raised concerns about Phalatse with doctors, they thought she had a skin disease and tried to treat it with creams.

The doctors decided to sign a contract with the Progeria Research Foundation in the United States.

“I told Bella that we needed to get your child officially diagnosed and it could only be done in America. Ontlametse had to go to Boston for an official diagnosis.”

In 2010, it was finally confirmed that Phalatse had progeria and she was included in clinical trials. The foundation offered them three tickets for the trip. Mothoa said she gave her ticket to a nurse to accompany Phalatse in case of an emergency.

“When they came back I was pleased because the illness had a name. People did not have to speculate and the mother was relieved.”

Mothoa said Phalatse and Bella travelled to Boston a second time.

“I was unemployed and I had abandoned my job, so I had no money to give them. Ontlametse started getting treatment and she started getting better and gaining a bit of weight.”

We did not have money

When a documentary about Phalatse was aired, people came forward to donate essentials. The help later dwindled.

“We were left alone, with no money again.”

An organisation called Agisanang Social Club offered to help, but Mothoa was initially sceptical. The organisation helped form the Ontlametse Phalatse Trust.

“People hated me for being protective of Ontlametse. But if I had to do it again, I would. I never allowed people to take advantage of Ontlametse.

“Ontlametse made me smile. We did not have money, but we had Ontlametse. She oozed confidence.”

Mothoa said progeria made Phalatse’s cognitive abilities develop rapidly.

“She was so resilient and intelligent and it appeared as though her intelligence grew faster like the progeria. I loved her like one of my own.”

On April 11, the day Phalatse died, Mothoa said she received a frantic phone call from Bella.

“I went to Hebron clinic and I could see that she was struggling. They put her on the oxygen tank and we took the tank and drove to the Dr George Mukhari Hospital. It was the longest drive of my life.”

At the hospital, staff were afraid to touch Phalatse.

“It took like 10 people because no one was aware of the condition. I could see that that day Ontlametse was scaring me. I knew that that was the day that the Lord had made.”

New she was going to die

Earlier that Tuesday, Phalatse had picked up the dress she was going to wear at Zuma’s birthday celebration, to which she had been invited as a special guest.

“She gave her mum her birthday present on Monday, two days before the birthday and then passed on, on Tuesday. Apparently when she gave her mum the watch she told her to watch time, it was the beginning of beautiful things.”

Mothoa said she believed Phalatse knew she was going to die.

She said a documentary about Phalatse’s life was being produced.

Mothoa’s daughter, Tshwanelo, who was Phalatse’s friend, said Phalatse lived life to the fullest.

“The only reason I would go visit my late great-grandmother’s house, the blue house next door, was because I knew that fun was guaranteed.”

Breaking down, she said fun was Phalatse’s middle name.

Selfless

“You always knew that you were destined for greatness and there was no room for mediocrity. To me you were never normal. How could one person be so selfless, caring and beautiful?

“She was the epitome of ubuntu, we are who we are because you others.

“You were not just a star to me, you were the entire constellation. I know you are sitting in heaven right now and drinking Oros and rolling your eyes at the long speeches.”

Phalatse’s brother Tshimologo thanked God for Phalatse’s life.

Hundreds of Hebron residents attended the moving funeral service. 

Afropop singer Lira sang Phalatse's favourite song, “Something Inside So Strong”. 

Read more on:    ontlametse phalatse  |  health

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