Sunday, October 30, 2011

Doctors Say She Won't Live Beyond 13 - But She Manages to Joke About it

Alice Mminele

12-year old Ontlametse from Hebron, Pretoria, lives with Progeria. Greek word meaning “prematurely old”. This is an extremely rare condition that affects 1 in about 80 million new-borns in the world. The scientific name for this condition is Hutchinson Gilford Progeria syndrome, which was discovered in 1886 by Jonathan Hutchinson and Hastings Gilford.

This disease normally begins to appear at about 18 to 24 months of age. This, however, was not the case for Ontlametse as her family found out what was wrong with her when she was 10. Doctors were dismissing her condition as bad skin rash while classmates and teachers mocked her, saying she was HIV positive.

This young girl, unshaken by her disease, lives a happy life and is really cheerful. Her confidence is amazing and her passion for life begins to show the youth of today that there is life, despite any situation that one might encounter. With her wrinkled hands, bold head and tiny body, Ontlametse finds joy in each passing day and is never afraid to go to school even after years of prejudice from other pupils and some teachers.

“She is confident and beautiful,” says Katlego Mathabe, her only friend from school.

This grade 7 learner, resembles an ageing woman, with the height of a 4 year old. She is known as the only black female with this disease in South Africa. Her life expectancy is 13 years, yet she prays every night as she believes she can overcome anything.

“I pray for Ontlametse each day, so she can live longer,” says Bellon Phalatse, her mother.

Her father abandoned her as a child, due to her appearance.

Ontlametse's heart is filled with love, as she protects her friends’ feelings by not telling them that her life will be shorter than theirs. She goes to the US during school holidays, where scientists are trying to find a cure for her condition. This research programme takes place at Boston University's Progeria Foundation.

Ontlametse is humorous too. “I am the only person in Hebron who has been to the US four times. They think my mom is rich,” says Ontlametse as she cracks into laughter.

One of the longest living people with Progeria lived to be 29 years old. Another South African from Cape Town who lived for 26 years was Leon Botha, group member of “Die Antwoord” music group. Botha was born on the 4th of June 1985 and died on June 5th 2011 after complications of Progeria, one day after his 26th birthday.

No comments:

Post a Comment