First Black Child On Earth Diagnosed With Heart Breaking Aging Disease
JOHANNESBURG (AP) — The elfin child with the big personality and bright smile calls herself "the first lady" and dreams of the future.

But doctors say 12-year-old Ontlametse Phalatse has only, perhaps, another couple of years to live.

"I call myself a first lady because I'm the first black child with this disease ,  Which other black child do you know with this disease?" she challenged.

Ontlametse is the sole living black child diagnosed with progeria, a rare and fatal genetic condition that accelerates the aging process, the Progeria Research Foundation said. It was aware of two other black children ever diagnosed with the disease, who died in the United States and the Netherlands.

Nobody knows how many kids in the world have it, though experts estimate that between 200 and 250 children live with progeria at any one time. In a two-year campaign to identify them, the Progeria Research Foundation says the number of children diagnosed around the world has soared from 54 to 80 on five continents — a 48 percent increase.

The foundation's executive director, Audrey Gordon, says the only Africans diagnosed with the disease were found in South Africa and only two survive — Ontlametse and a 5-year-old white girl. That is probably because South Africa, an economic powerhouse, offers some of the best medical care on the continent. At least one other South African diagnosed, a white male, died in the past year.

Gordon says there are several black holes on the map in her office studded with colored tacks where they have found children living with progeria. "We know that there are children (with progeria) in Africa, in China and Russia, but we just can't seem to get to them," she said in a telephone interview from the foundation's office in Peabody, Massachusetts.

Ontlametse's mother, Bellon Phalatse, says her baby was born looking normal but that she realized early on that something was wrong. The baby suffered constant rashes and by the time she was 3 months old Phalatse thought she had a skin disease.

Before Ontlametse celebrated her first birthday "her hair was falling, her nails weren't normal, the skin problems, we were going up and down to the doctors."

As the child aged prematurely, her father abandoned the family when Ontlametse was 3 years old.

Despite her frequent illnesses, Ontlametse enrolled in school at 6 and proved a bright pupil. But she was often scorned by classmates, teachers and others who thought she was so small and skinny because she had AIDS. South Africa has the highest number of people living with AIDS of any country but the disease still carries a terrible social stigma.

"It was horrible, I don't know how to explain" what we went through, Phalatse said.

It was not until two years ago that a doctor friend suggested she have Ontlametse tested for progeria, and brought her a book about the disease.

It included pictures. Children with progeria look remarkably similar, despite different ethnic backgrounds: small and bald with oversized heads, eyes that bulge a bit, gnarled hands. They suffer from thinning skin which has a network of blue veins showing on the heads of white children. Ontlametse's veins bulge.

Phalatse said she knew immediately, and a doctor confirmed the diagnosis.

"I'm very happy now that I understand what causes progeria," Phalatse said.

The diagnosis came with the news that most children with the disease die at 13. But it also brought a better understanding of what they can do to try to prolong Ontlametse's life, and it has brought her the specialized care she needs.

Each school holiday, Ontlametse and her mom fly to the United States, where she participates in research funded by the Progeria Research Foundation at Children's Hospital Boston. It gives her access to cutting edge drugs that are not yet commercially available.

Back home, they struggle to feed her the required healthy diet. Phalatse is unemployed and the two survive on her daughter's government disability allowance.

Ontlametse is unfazed: "Sometimes when my mommy has money, she buys lettuce and cucumbers and I help her do salad."

At school, Ontlametse keeps her hat on her head, self-conscious of her bald head. One of the things on her wish list is a specially designed wig.

She has two friends in her class but says not all her classmates are kind, but it doesn't bother her.

"I don't care what people say about me," she says, making a throwaway motion with a hand misshapen with arthritis, knobby fingers and discolored nails.

In her rundown brick home in the small town of Hebron about 50 miles (80 kilometers) north of Johannesburg, Ontlametse ditches the hat. She does her homework, reading, watches TV and has daily chores like washing her socks and cleaning her shoes. She can't play sports or even a game of hopscotch because physical exercise tires her out.

Asked what she would like to be, she breaks into a big grin that shows irregular teeth.

"I would like to be a psychologist," she says, "so that I can work on the problems of other people and so that they can accept the way that they are because they can see that I accept the way I am."

That she would live that long would require a miracle. Children with progeria die almost exclusively from heart disease between the ages of 8 and 21, commonly suffering high blood pressure, strokes, angina, enlarged heart and heart failure.

Gordon said research into progeria has had remarkable success since her family founded the foundation in 1999, after her nephew was diagnosed with the disease.

In 2003, the foundation was instrumental in the discovery of the progeria gene. Now they hope it can help provide answers about the ordinary aging process and cardiovascular disease.

(This version CORRECTS Corrects that subject is only living black child with progeria, that other South African sufferers have died, and that numbers diagnosed worldwide rose from 54, instead of 48, to 80)

http://www.seattlepi.com/news/article/South-Africa-First-black-child-with-aging-disease-2163481.php

I salute her courage

looks like those (ide esu) children used in those yrs back yoruba film.

^^was about to say so

On a "Story of Benjamin Button" level.

bouzymill2:

On a "Story of Benjamin Button" level.

I was thinking the same thing.

and then some people think they have problems!

~Sissy~:








and then some people think they have problems!

My dear such is life oh!!! It's until u see one wif a worse case u wud knw hw God has blessed u!!

The coming of the LORD Jesus is very imminent. Accept Jesus today so that you can escape the wrath to come upon the whole earth.

OMG! She looks like E.T.! Poor precious child! I hope she is able to spend her remaining days surrounded by happiness and love.

Heard children with progeria doesn 't age past 13 yrs

d girl looks like those twins in yoruba movies some years ago.those ones self marry last year,so make them support this girl too.

With God all things are possible.I believe in miracles.

1stknight:

Heard children with progeria doesn 't age past 13 yrs

It's prominently mentioned in the article, Captain Obvious.

And we think We have problems, good to know she's handling it well & living her life to the fullest

The name of the disease proGERIA Rhyme with NIGERIA, Just like maleria, Lol, jst thinking sha.

lol@Mister Paul, haba bros!
Maybe Nigeria has progeria??

moremi2008:

OMG! She looks like E.T.! Poor precious child! I hope she is able to spend her remaining days surrounded by happiness and love.

in a broken home

i tank GOD for my life

texazzpete:

It's prominently mentioned in the article, Captain Obvious.

Thanks. Didn 't read d article b4 i posted

This world is full of various problems.

;d

I love this baby's spirit. Hope everyone who thinks he/she has the greatest problem on earth will learn to take things easy like this innocent child.

This is really sad. I hope a cure or control can be found for her.

solayemi:

d girl looks like those twins in yoruba movies some years ago.those ones self marry last year,so make them support this girl too.

Do they have Progeria?

@adetunrayo
d girl looks like those twins in yoruba movies some years ago.those ones self marry last year,so make them support this girl too.

@kunbee
Do they have Progeria?

They may not have progeria, but trust them, they can make one look like the progerias!!!!
Yoruba and mystics, I fear (don't) watching Yoruba movies, very scary!!!!!

God is wonderful, life is vanity.

Awon Ibeji Oran have the same disease,i mean the acting twins from Osogbo.they look 100% alike, lol

we have many of such cases in Nigeria. Probably higher than what we have in South Africa, yet, no one ever talked about it in Nigeria. No documentary, no education about it. I've seen more than 10 of such cases all over Nigeria.
Its likely that Ontlametse Phalatse is not the first person to have this disease, but she was the first to have been noticed in South Africa.

Its called Progeria,i Think India has the highest amount,I think a lady there had 3 kids with the disease,they normally die in their early teens,its sad,and they are really almost sweet kids.

Mehn, my heart sink. I have never heard of this until now. I am shocked to the bone marrow.

Whenever I watch movies and see some strange-human-like creatures (typically, smiggle in the Lord of the Ring), I concluded they were products of crafty manipulated digital works or sort of make-up. This shows that some might be humans.

SMH, I am humbled that some of these are actually humans. CHRIST! this is incredible! I believe in miracles, pls, Lord show thy self to those who have been entangled by the evil web of this disease. This ignorantly challenges your power and negate the beauty of your image which man was made from. Your name will eternally be glorified for you are GOD. Hope is not lost my friend Ontlametse Phalatse.