A 20-year-old Eastern Cape mother from Libode has given birth to a baby with a rare condition called progeria – a progressive genetic disorder that causes children to age rapidly.
Progeria is also known as Hutchinson-Gilford progeria syndrome (HGPS).
This has left the family of the young mother as well as community members in shock.
The baby girl was born at home two months ago. Local mid-wives noticed that she exhibited signs that were different from most babies. Her hands are deformed and her skin was wrinkled. She is currently in hospital with her mother.
Her grandmother was one of the midwives.
“When she was in labour we called an ambulance but it took long to come. So she gave birth here at home. But the delivery got complicated and we hired a van to take her to hospital. We were told there that she’s disabled. I noticed during her birth that there was something strange with her. She did not cry and she was breathing through the ribs. I was shocked because that was strange. Now I hear that people are calling her names. That hurts a lot. If I had means, I would put all of them in jail,” says her grandmother.
The little girl’s pictures have been circulating on social media. Some users likened her to an ape, causing outrage and anger among those who sympathize with her.
A need for education on progeria
Director of children’s rights organisation, Khula Community Development Project, Petros Majola, believes communities need to be educated about this condition.
“Communities must know that the mother did not apply for her baby to be like this. In a woman’s womb, there is no construction or factory that builds babies. People need to embrace this child for who she is,” says Majola
Medical experts say the genetic condition occurs randomly and is not inherited. Doctor Martha Mayer, a neonatologist at the Nelson Mandela Academic Hospital says the syndrome is very rare.
“Progeria is a genetic condition that makes the baby age faster. Another thing is that these children also develop heart diseases and their life span is very short. We have never had a child with that condition in this hospital. It is very rare, maybe it happens to one in four or eight million people.”
A need for assistance
The provincial government has stepped in. Social Development Spokesperson, Mzukisi Solani, believes both the mother and family as well as the community need assistance.
“After hearing about the girl, MEC of Social Development, Siphokazi Mani-Lusithi sent a highly skilled team of social workers to that family. They will then make recommendations so that we do something to relieve the social stress this might have caused to the mother, the family and the community.”
The Human Settlements Department has also visited the family to ensure that the little girl has a decent home to grow up in.
Progeria affects about 1 in 20 million people around the world and there is no known cure.
Ontlametse Phalatse, who captured the hearts of many South Africans for her brave battle with progeria, died at the age of 18 in 2017.
Video | Life and times of Ontlametse Phalatse