Ontlametse
The witty 12-year-old from Hebron, in Gauteng, exudes the confidence of someone far older. Despite her tiny body, she wants people to take her seriously.
Ontlametse, who resembles an ageing woman, is the only known black female born with the extremely rare premature ageing disease progeria.
After 10 years of wondering why she was so small and enduring scorn from classmates and teachers, who said that she was HIV-positive, the girl with sensitive transparent skin and wrinkled, knobbly hands was diagnosed as one of only about 78 people in the world with the disease.
She has a life expectancy of 13 years but her mother, Bellon Phalatse, prays that her only daughter will live for “many more years”.
“She knows she’s going to die; she has just accepted it. I wish she’ll live longer than that.”
But little Ontlametse is unfazed about her condition and only wants to enjoy life.
“It’s nice that I have accepted who I am. I don’t care what people say. I’m proud of myself. I’m glad I know who I am,” she said with a huge smile on her face.
Katlego Mathabe, her only school friend, describes Ontlametse as self-confident and beautiful.
The grade 7 pupil, who is the same height as a four-year-old, wants to be a psychologist and hates missing school for doctors’ appointments.
“Since I really learned about my disease, maybe I can counsel kids because I did psychology by myself,” she quips.
Despite her self-confident outlook, life has not been easy for her.
When she was about three years old, her father abandoned the family, unable to deal with his daughter’s appearance.
Said Phalatse of her daughter: “If I don’t love her, who will? I thank God I didn’t hide her, I didn’t put her in a room and lock her up.”
When Ontlametse was diagnosed, a doctor at the University of Pretoria arranged for her to join a clinical trial in the US.
During school holidays, she flies to Boston University’s Progeria Research Foundation, where scientists are trying to find a cure for the condition.
A label on her bottle of pills has an orange warning: “New drug limited by US Federal law for investigational use.”
Ontlametse giggles when she says she is the only person in Hebron who has been to the US four times.
“People ask me why I’m like this and why I’m going to America. They think maybe I’m going there because my mum is rich,” she said.
But her mother, who is unemployed, depends on her daughter’s disability grant and flights to the US are paid for by the researchers.
Phalatse said Ontlametse had several allergies and even buying her rice-milk powder and fresh green vegetables was impossible.
“Sometimes when my mummy has money she buys lettuce and cucumbers and things that I like.”
At the top of her wish-list, though, is a specially designed wig, costing R15000, that Vodacom last week agreed to pay for, along with a wheelchair.
A food hamper, boarding school fees, a wheelchair, medical assistance, meeting Nelson Mandela and a home for her family are among the energetic young girl’s wishes.
Article by: Harriet McLea
Photo by: Lauren MulliganSource: http://www.timeslive.co.za/local/2011/08/08/the-little-old-girl#
