Eastern Cape govt urges public to help family of girl born with rare genetic condition

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The department of health warned the public to respect a mom and newborn.
The department of health warned the public to respect a mom and newborn.
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  • An Eastern Cape baby girl was born with a rare genetic disorder known as progeria in June.
  • Pictures of the child have gone viral on social media. 
  • The baby's family has pleaded with the public to stop sharing pictures and making jokes about the newborn.  

Eastern Cape Social Development MEC Siphokazi Mani-Lusithi has urged the public to show support to the family of a baby girl born with a rare genetic condition, progeria, which makes her look like an old woman.

Her 20-year-old mentally challenged mother, who cannot be named to protect the identity of the infant, gave birth at home.

Progeria is a syndrome in children characterised by physical symptoms suggestive of premature old age.

According to the Mayo Clinic, it is extremely rare and one of the syndromes - Wiedemann-Rautenstrauch - starts off in the womb, with symptoms apparent at birth.

READ | 'I love my baby boy, I want him back' - mom of newborn snatched in KwaZulu-Natal

The disease was popularised through F. Scott Fitzgerald's short story, The Curious Case of Benjamin Button, and the 2008 movie by the same name starring Brad Pitt.

Button, the protagonist, ages in reverse, having been born looking like an elderly man.

The Eastern Cape baby was born in June in a village outside Libode.

Shock

Her birth caused a stir in the village, leaving family and residents in shock.

Pictures of the baby have since gone viral on social media, with some people taking swipes at the family and making fun of the child's appearance.

Mani-Lusithi pleaded with people to be empathetic, and support the child and mother.  

The department said as the progeria condition played out, it could probably change social behaviour toward the mother and child:

After hearing about this, the MEC of social development dispatched a team of highly skilled and experienced social workers to go and assess the socio impact of this situation. The social workers are expected to profile and make recommendations on possible interventions to ensure we alleviate the stress this could have caused to the mother, family and community.


The woman's mother helped deliver the baby at their Ngavungavu Village home.

The 55-year-old grandmother told News24 on Tuesday she immediately saw the child was different.

"She did not scream and there were no signs of the placenta, clots and other things that come after the birth. This was very worrying because the mother was starting to bleed excessively," she said, adding the baby's skin was wrinkled and she looked like an elderly woman.

The grandmother added both the mother and child were taken to Mhlakulo clinic before they were transferred to Dr Malizo Mpehle Hospital for further observation.  

She said both were in good condition. 

A medical practitioner close to the situation said the "retained products of conception [placenta, etc]" were removed at the hospital.  

"The retained products of conception [placenta] do not mean it is the genetic condition of the baby that caused them not to be discharged. The problem lies with the mother of the baby due to some complications," the health worker added. 

The baby's birth has become the talk of the local village.

But the family said they were now fed-up with the distasteful jokes and gossip.

The grandmother said: 

I am heartbroken. Everyone is talking about this incident. I would like people to stop immediately because their comments are hurting us a lot.

Although the baby was born in June, her birth only became known at the weekend after pictures were circulated on social media. 

The grandmother added the infant's mother quit high school after she struggled to progress.

"She was a slow learner, but the teacher and I noticed that she was mentally challenged. We are a poor family. I am unemployed, depending on the child support grant for my other two children, aged 10 and 15. I don't have a husband," she said.

Children's rights activist Petros Majola weighed in on the matter, saying: 

I have noticed that many people on social media have become overnight medical experts. They should stop it immediately. On the other side, I would like to thank the government for their intervention on this matter. I will also return to the home and monitor the upbringing of the child.

Senior officials from the departments of social development and human settlements visited the home after complaints from the public about the appalling state of the house and the poverty the family was living in. 

Human Settlements MEC Nonceba Khontsiwe's spokesperson, Yanga Funani, said: "The purpose of sending officials there is to verify a complaint we got that the family was living in deplorable conditions. It is standard procedure to verify before taking action."

The provincial health department did not respond immediately to questions. Its response will be added once received.

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