Onatlametse Phalatse was born on 25th of March 1999. She is the first black child to be diagnosed with Progeria, a rare and fatal genetic condition that causes a child to age rapidly. Phalatse’s mother says her baby was born looking normal but that she realised early on that something was wrong. Phalatse suffered constant skin rashes and her mother even thought she had a skin disease when she was three years old.
Phalatse’s father left her and the mother when she was three years old shortly after she was diagnosed with the deadly disorder. Although she’s a very bright student , Phalatse hope to one day become a Psychologist so she can help other people with their problems.
The disease is very rare and as of today, only 140 children has been diagnosed with the disease which causes children to age much more faster than their real age and the life expectancy for such children is only 13years. Doctors told her she won’t live more than her 14th birthday, but now it’s safe to say it’s just a miracle that she’s still alive as she celebrated her 18th birthday this year.
Though children with this rare but deadly disease are not expected to live past the age of 21 (as no child has ever managed that feat) but she has a dream of becoming a psychologists just to help other people with their problems. One of her dream was fulfilled in March 2017 just before her 18th birthday. To see the president of South Africa before she turns 18.
‘’I call myself a first lady because am the first black child with this disease”
Each school holiday, Phalatse and her mother fly to the United States of America, where she participates in research funded by the Progeria Research Foundation at Children’s Hospital, Boston.
It gives her access to cutting edge drug that are not yet commercially available. Back home, they suggest to feed her the required healthy diet. Phalatse’s mothers is unemployed and the two survives on her daughters government disability allowance.
Disease Symptoms
Children with Progeria usually develop first symptoms in their first 3 months of life. As the child ages, additional symptoms includes loss of heir, wrinkled skin, kidney failure. People diagnosed with this disease at a point usually have a small and fragile body like old people. The face is also wrinkled, very big head in relation to the size of the body a narrow face and a beak body.
Disease History
The name of the disease progeria comes from the greek word ``pro’’ which means premature or before and ``geras” meaning old age. The disease was first mentioned in 1886 by Jonathan Hutchison. It was also described in 1987 by Hastings Gilford. It was later named Hutchinson-Gilford progeria syndrome.
Scientist are however interested in progeria as it might reveal clues to the normal process of ageing.
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