First Black Child Diagnosed With Rare Rapid-Aging Disease
- Posted on September 9, 2011 at 10:13am by
Liz Klimas
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JOHANNESBURG (The Blaze/AP) — Most women don’t start fretting about aging until their mid-twenties, even then it’s superficial. But Ontlametse Phalatse, a 12-year-old South African girl, and her mother began worrying about Ontlametse aging when she was 10.
Ontlametse Phalatse concentrates during a mathematics class at the Lorato Primary School in Hebron, near Pretoria, South Africa. (Photo: AP/Denis Farrell)
Doctors say Ontlametse has only, perhaps, another couple of years to live. You see, Ontlametse is the first black child diagnosed with progeria, a rare and fatal genetic condition that accelerates the aging process, the Progeria Research Foundation said. According to the National Institute of Health, the disease is found in 1 in 4 million births — since it was first described in 1886, little more than 130 children have been reported in scientific literature.
Watch Ontlametse explain the disease herself:
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 three 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.
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. Ontlametse proclaims herself as the first lady.
“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.
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 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.
Nobody knows how many kids in the world have it. In a two-year campaign to identify them, the Progeria Research Foundation says the number of children diagnosed around the world has soared from 48 to 80 on five continents.
The foundation’s executive director, Audrey Gordon, says only two Africans have been diagnosed and both live in South Africa — 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.
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.
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. A mutation in the LMNA gene programs cells to die prematurely. Fox News reported in 2010, that this gene, which produces a toxin called progerin that triggers cell death, is linked to shortened telomere length (the repetitive sequence of DNA at the end of a chromosome). Telomere shortening has long been associated with aging. This study helped show that it wasn’t just a wearing out of old cells that caused aging, but that aging was in fact programmed into the cell.
Scientists are continuing research on this gene that they hope can help provide answers about the ordinary aging process and cardiovascular disease.
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Comments (51)
4truth2all
Posted on September 9, 2011 at 7:01pmWhat a sweetheart !!!
Report Post »MUDFLAPS
Posted on September 9, 2011 at 6:36pmsorry, a little girl.
Report Post »MUDFLAPS
Posted on September 9, 2011 at 6:35pmsorry for this little fella. He did nothing to deserve this. I pray for him.
Report Post »Tomfang
Posted on September 9, 2011 at 5:26pmWhen they find a cure for this disease, it may help us all live a little longer. There must be some type of gene that causes this. Find that gene and you may find the fountain of youth!
Report Post »hopetochange2012
Posted on September 9, 2011 at 4:00pmTerribly difficult for a child to have such an affliction, but I notice that the biologic father “abandoned” her when she was 3 years old, making the situation worse.
I am sick to death of fathers who accept no responsibility for their children, whether the child is sick or not. Such men need to be hunted down and forced to pay big $$$ for their dereliction of duty. All around the world, including especially the USA, absent fathers are rampant. Society needs to put a stop to their dereliction by identifying them and garnishing their wages; and if they won’t work, they don’t eat (see 2 Thessalonians 3:10). THIS is the gratuitous, added tragedy of this little girl’s life. Shame on her father — forevermore!!
Report Post »another_mormon_4_Ron_Paul
Posted on September 10, 2011 at 8:19amIt’s more than just the money. Children need good fathers in their lives for emotional balance.
Report Post »FoxholeAtheist
Posted on September 9, 2011 at 3:59pmHere’s one: Maybe ‘gawd’ shouldn’t have let her be born like this in the first place. What a disgusting entity you zombies worship.
Report Post »COFemale
Posted on September 9, 2011 at 4:34pmBless your little heart FoxHoleatheist.
If you need a translation, please ask someone from the south!
Report Post »COFemale
Posted on September 9, 2011 at 4:37pmWow and that same God allowed you to be born.
Report Post »MASTER YODA
Posted on September 9, 2011 at 5:10pmIt’s a shame at this early age, she is fixated on skin color?
Report Post »ThirtyEightWinks
Posted on September 9, 2011 at 6:27pmWe all will have trials, this life is passing for all of us. I had a son die at 8 months gestation due to a genetic disorder. Twice I was asked, by well meaning people, if we were going to abort him. “But why? If he is going to die, why would it be better for me to kill him before his natural death?” FoxHoleAtheist, you and I can look at the same situation in life, and I’ll see a chance to grow, and you’ll see emptiness and misery. The world is broken and fallen, but that doesn’t make God mean or cruel. He walks with us through the trials, and gives them meaning.
Report Post »4truth2all
Posted on September 9, 2011 at 7:07pmLooks like she is a whole lot happier than you.
Report Post »Doesn’t seem to be angry at God at all.
If she ain’t buggin about it, why are you?
Wyatt's Torch
Posted on September 10, 2011 at 9:32amDearest foxhole… maybe you consider yourself an atheist because you have suffered from and have fallen for one of satan’s oldest and most prolific lies… that we all get what we deserve. It is possibly easier to accept that there is no God than to allow yourself to know that God’s love is a refining love, not a coddling one. Bad things happen to good people in this fallen world to remind us all that there are things that are far worse than death, that have ramifications far beyond our earthly lives, and that our time here to sort these things out is finite and uncertain in duration. He even allows horrible things to happen in the lives of His own children so that others may see His love and comfort through their perseverance and faith, not because he is powerless or unwilling to intervene. I pray that God will soften your heart before even you taste death, because we all will, ready or not (even an atheist can’t argue with this fact).
Report Post »Zcat
Posted on September 9, 2011 at 2:05pmBless her heart. I follow Hayleys Progeria progress, She seeking treatment here in a top secret program with the childrens hospital here in the USA, her progress has been great, I think she 12 now, maybe 13, life span for these children 10-13. The last update, she was beating the odds for now with the treatment here. I love this little girl, she’s so precious, and she also was very excited about her visited with Justice Beeber(?) I thought that was great the spent so time eith here. Here is her webpage.
http://www.hayleyspage.com/
Report Post »Meyvn
Posted on September 9, 2011 at 1:47pmMy heart goes out to her. However, she seems to be happier than most of us here that are likely disease free.
Report Post »DR.POP
Posted on September 9, 2011 at 1:07pmPoor girl. I am surprised that the left has not yet found a way to blame it on Tea Party Racism.
Report Post »axeptance449
Posted on September 9, 2011 at 1:15pmWhile no sane person would even suggest a political ideaology behind this illness I see you have.
Report Post »jkendal
Posted on September 9, 2011 at 1:41pm“While no sane person would even suggest a political ideaology behind this illness I see you have.”
The good doctor isn’t suggesting that a political ideology is behind the illness – only that it hasn’t been blamed on the TEA Party yet. Give it another day or two, though, and the stupid leftists will find a way…..
Report Post »Zcat
Posted on September 9, 2011 at 2:06pmI totally agree, this has NOTHING to do with politics!
Report Post »DR.POP
Posted on September 9, 2011 at 2:12pmNo one has more compassion for people than a person who spent 9 years of his life and over $200,000 of his own money to serve the public (ie: me). My original comment has nothing to do with a lack of sympathy for the poor girl. Just a lack of tolerance for the Left lacing everything negative into their agendas. Just wait a few days and we will see.
Report Post »yanki161
Posted on September 9, 2011 at 1:05pmWhat a beautiful soul. So sad for her mom.
Report Post »NuffSaid
Posted on September 9, 2011 at 12:22pmAIDS apparently was a clever enough virus that it even jumped from one species to another. Could this sudden appearance of aging indicate a virus is afoot?
Report Post »patchouli42
Posted on September 9, 2011 at 1:14pmI don’t even know how to really respond to that statement. We are all human so of course the AIDS virus is going to spread across races. After all if you breed a pitbull with a chihuahua you still get a dog!
This problem is genetic. The only reason that it has not been seen in a black person is simply because the condition is so rare that it goes undiagnosed in many places in the world.
Report Post »jkendal
Posted on September 9, 2011 at 1:50pm“We are all human so of course the AIDS virus is going to spread across races. After all if you breed a pitbull with a chihuahua you still get a dog!”
Report Post »——————
FYI, the AIDS virus didn’t originate in humans. Not sure what the breeding of dogs has to do with it, either…..
lucyloo
Posted on September 9, 2011 at 12:18pmGod bless this young girl…I hope whatever is left of her life is rewarding as much as possible…God bless her mother too….
someday, we will have no sickness, no hunger, no thirst…….
Report Post »Old Truckers
Posted on September 9, 2011 at 12:45pmWant to see it? And I saw a new heaven and a new earth; for the former heaven and the former earth had passed away, and the sea is no more. 2 I saw also the holy city, New Jerusalem, coming down out of heaven from God and prepared as a bride adorned for her husband. 3 With that I heard a loud voice from the throne say: “Look! The tent of God is with mankind, and he will reside with them, and they will be his peoples. And God himself will be with them. 4 And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.” – Revelation 21:1-4
Report Post »sWampy
Posted on September 9, 2011 at 11:53am“White” kids are getting cycle cell now also, actions have consequences.
Report Post »paying-for-freedom
Posted on September 9, 2011 at 12:58pmYour right but not specific enough, pure white kids still don’t get it. Only the ones with a tint to their heritage do!
Report Post »ShamanWorld
Posted on September 9, 2011 at 5:06pmThat’s B.S. If the human race began in Africa, all other races were the product of albinos and human “grafting” and mixing. African Albinos are blonde hair and blue eyes by birth of 2 BLACK parents. Are they the “master race” the Nazis alluded to? Probly not, but don’t feel so special if you have blonde hair and blue eyes.Just Google: “Albino” and don’t forget the sun tan lotion…
Report Post »bskiver
Posted on September 9, 2011 at 11:50amHow can we all help and support her with making sure she gets the right nutrition and maybe a fund to help them out with other expenses?
Report Post »liberalsarealiens
Posted on September 9, 2011 at 11:46amGood luck to you Sweetie, we are praying for you and your friends. Please don‘t believe it when they say it’s all George Bush’s fault Honey. They just can’t help it!
Report Post »biohazard23
Posted on September 9, 2011 at 11:20am“As the child aged prematurely, her father abandoned the family when Ontlametse was 3 years old.”
What a lousy piece of…. Then again, this little girl has more class and dignity in her little finger than he has in his whole selfish, miserable body. God bless this child and her family. I can’t even imagine what they must be going through.
Report Post »gotta light
Posted on September 9, 2011 at 11:54amWOW and i was worried that progeria was raciest!!!
I am glad that a black person now has it.
Thanks Mr. Obama for evening out the playing field. :-P
Hey bud gotta light?
Report Post »Old Truckers
Posted on September 9, 2011 at 12:41pmWhat kind of man would abandon his family? I guess I do not need to tell you.
Report Post »phamill
Posted on September 9, 2011 at 11:08amLook were they come for help! The evil america! and that health care that is unfair and needs more government to make it a better system. Oh then why dose EVERYONE around the world ALWAYS come to America?
Report Post »This_Individual
Posted on September 9, 2011 at 10:58amThe first, that we know of. Many blessings to her.
Report Post »Snowleopard {gallery of cat folks}
Posted on September 9, 2011 at 10:42amGod be with this child, let the short life she has be one of joy and hope, and love held into the hearts of all around her. Let a cure be brought to her Almighty God…and on the day she goes home to your loving arms, comfort the family and friends of hers. Amen.
Report Post »Truthbeliever2
Posted on September 9, 2011 at 10:56am“I would like to be a psychologist,” she says, “so that I can work on the problems of other people”
An absolutely amazing child, and a credit to the human race.
My heart bleeds for her.
Report Post »SLARTIBARTFAST
Posted on September 9, 2011 at 1:03pmSnowleopard
Report Post »Thank you for that prayer…. I couldn’t find all the words myself
Snowleopard {gallery of cat folks}
Posted on September 9, 2011 at 2:25pm@SLart — it is easy, just pray what is in your heart. God takes it from there to the world.
Report Post »kickagrandma
Posted on September 9, 2011 at 10:41amGOD comes to us in many disguises. Looks to me like she is one of HIS better ones. GOD BLESS, tiny, bright child!
Report Post »RavenGlenn
Posted on September 9, 2011 at 1:41pmI’m sorry…while this girl‘s disease is awful and tragic and I wouldn’t wish it on anyone…you are going to praise God for it? I’m not going to get preachy on this sort of story as I do truly feel and respect someone that has this much suffering in life…but yeah. I don’t understand some of you.
Report Post »4truth2all
Posted on September 9, 2011 at 7:25pmYo Ravenglenn:
Report Post »Don‘t think ’Kickin” was praising God at all… maybe you were not refering to, but you replied here.
If ( and I say if for your benifit) there is a God, He has a purpose in all things. Did you read how others treated her. Maybe that in itself is part of the purpose of her precious life. All things go to the glory of God, so says the bible.How it all works out ??????
56 Benz
Posted on September 9, 2011 at 10:41ama Body that is different, but one that GOD loves dearly
ithelpstopray.com
Report Post »CatB
Posted on September 9, 2011 at 10:38amI have seen shows about these children and their parents .. they are amazing people .. they know what is coming and work hard to give their children the best life they can while they have them. They have “reunions” where these few children get together and can play and interact with othere children like them. God Bless them and their families .. hoping that they find a “cure” for this sooner rather than later. They are working on it .. and children are coming to the U.S. from other countries to aid in that research .. praying Obamacare doesn’t kill it … before we can “kill” Obamacare.
Report Post »tranymike
Posted on September 9, 2011 at 10:31amit‘s sad but she gets to fly here for now two years from now we’ll have the same berry care as her
Report Post »Truthbeliever2
Posted on September 9, 2011 at 10:59am??? huh?
Report Post »CatB
Posted on September 9, 2011 at 11:38amObamacare … give granny a pill instead of treatment …do a youtube video search to find it if you don’t know what this is (I am in the “north woods” on vacation and internet connection is lousy can’t get youtube to load) I am sure Obama would want to give these aging children the same treatment (none) as granny … a pill.
TEA!
Report Post »Hefsmaster
Posted on September 9, 2011 at 10:24amAmazing little girl. Has learned far more than most could ever dream. Wish her the best.
Report Post »itsmyfirstday
Posted on September 9, 2011 at 10:16amSuch a sad disease…
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