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.

“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.