A kid who looks like an 80 year old man. And this is China
Progeria- a very rare disease. The family of 12-year-old Miles shares how they are coping with their son's death sentence.
Miles himself is an ordinary teenager, even if he looks unusual. He refuses to think about death and prefers to live for today. Looking at him, those around him learned to stop putting everything off until later, because even a healthy person does not know when he will die.
This is an article from the Swedish newspaper "Svenska Dagbladet" translated INOSMI.
Miles is in sixth grade, but he already has the body of an old man. Despite all the difficulties and an uncertain future, his parents consider themselves lucky.
“It’s very easy to go into a cocoon and feel sorry for yourself, but we’re actually incredibly lucky,” says Miles’ father, Jakob Wernerman.
Miles Wernerman sits cross-legged on the couch, Googling his name. “Nyhetsmorgon, 318 thousand. Malou, more than a million.”
He smiles contentedly from under the bill of his cap, his video has even more views than it had the last time he watched.
The first time I met Miles was in 2012, when he was riding a tricycle at an amusement park in Stockholm's Södermalm. He had just moved to Sweden and started first grade. He climbed to the top of all the children's climbing frames and refused to take off his Spiderman cap. His new homeroom teacher has agreed to make an exception for him and deviate from the hat rule because Miles feels bad about being the only one in the class who doesn't have hair.
This was six years ago. Since then, Miles' body has aged 48 years.
There are about a hundred known cases of progeria in the world, and Miles is one of these children. This means that he ages eight times faster than a normal person. The average life expectancy of such people is 13.5 years.
It's time for afternoon tea. Miles and his younger brother and sister sit down in the kitchen over tea with honey and start arguing about which artists and YouTube stars are cool and which are boring.
“I can’t drink any more tea,” Miles says and pauses theatrically, looking around the table. “Because otherwise I’ll overheat!”
Brother and sister laugh. Miles pounds his sheepskin slippers on the high chair he's sitting on. He has no fat on his body, including his feet, so it hurts him to walk without soft soles. Other consequences of the disease: he developed typical age-related ailments early, has no hair, and is very small - at 110 centimeters tall, he weighs 14 kilograms.
According to him, this is the worst. They don't make cool clothes or sneakers for his size. He is 12 years old and doesn't want to wear clothes from the children's department with trucks and dinosaurs on the chest.
I ask him if it's strange to him that all his friends are growing up so fast now.
"Not really. I'm with them almost every day. So I don’t notice them growing or anything like that.”
Next year he will officially become a teenager.
“Sometimes we forget how old he is,” says his mother, Leah Richardson. - He's so small. But then his friends come to visit, and they are so big! Just gigantic, almost grown men!”
"The worst period of my life." This is how she describes the time they received the diagnosis. Miles appeared healthy when he was first born in Italy, where Lea and Jacob lived and worked for the UN. Three months later, doctors tested him for this incredibly rare disease. All results were negative and the family could breathe a sigh of relief. But when Miles turned two, he was tested again. The family was already living in New York, and now the result was different: progeria.
“It was a death sentence. What do you do when your child is given a death sentence?”
Leia tells how her world collapsed again and again every morning. In the early years, Jacob talked to Miles about the disease, and she tried her best to make every second of her child's life as fulfilling as possible, and was tormented by her conscience when she was angry or when Miles was bored or sad.
“It’s very easy to hide in your hole and grieve when you find yourself in a situation like ours,” Jacob says, and Leah interjects that this is exactly what she did for many years.
But over time, they somehow learned to accept it. And today they are even grateful for the realization that Miles gave them: life is finite.
“Will Miles have time to go to university?”
The whole family got into the car, and Miles' seven-year-old brother asked this question. And he clarified:
“Will Miles go to university before he dies?”
“Probably,” Leah replied.
Miles thought about it. Then he remembered his older progeria comrade: “Sam is 20 and goes to university.”
They didn't talk about it anymore.
Once a year there is a meeting of European “families with progeria”, this October it was held in Portugal. Miles has a photo of the whole group on his desk, and he shows his best friends - two older boys with progeria from Belgium and England. They love to meet, because then they find themselves in an environment where their condition is the norm. But it's always sad to say goodbye. It is unknown which of them will still be alive next time.
Miles doesn’t usually think or talk about the fact that the average life expectancy of children with progeria is 13.5 years, even with his parents. Like many other twelve-year-old children, he is completely occupied with what is happening here and now. For example, playing football and night gatherings with friends. Or squabbles with brother and sister. Or homework. Or watching funny videos on YouTube.
But every day you have to take medications: slowing down the progression of the disease, lowering cholesterol, thinning the blood, as well as heart medications. At Astrid Lindgren Children's Hospital, Miles sees doctors who work on his skin, eyes, joints and heart. Much of this is about preventing common age-related illnesses, such as stroke and heart attack, from which children with progeria commonly die.
Svenska Dagbladet: What would you like most?
Miles lay down on the sheepskin on the floor, he just told us that the stuffed animals that were also lying there were old.
“Probably... a computer! My own desktop computer with everything I need, which will be in my room. That would be cool."
Now he mostly plays video games. He says that he is allowed to “walk” on Tuesdays, Fridays, Saturdays and Sundays.
“It’s best on Saturday, then I can play both in the morning and in the evening.”
A puppy is also on the Christmas wish list. But for now he has to make do with a stick insect. He and his younger sister Clementine each have a stick insect: one is named George Bush, the other is Annie Lööf.
There are two blue T-shirts hanging on the wall: a light blue one with Messi's autograph and the other from his favorite team, Djurgården. When asked if it also has autographs, he replies:
“No, well, maybe a couple.”
He smiles and turns it over, showing autographs from the entire team.
When Miles was filming Nyhetsmoron this fall, presenter Tilde de Paula gave him a birthday present: a ticket to Djurgården's home match against Gothenburg, and he could then go to the football field and eat at VIP salon and celebrate the 2:0 victory with the players. In the locker room.
Leah asks him to tell him what star football player Kevin Walker told him, and Miles lowers his head to hide his smile.
“No, mom, you tell me.”
“He thanked Miles for winning because he was their mascot,” she says and pokes him in the side.
Not for the first time, Miles had the opportunity to do what other children only dream of. Jacob and Leah find it difficult to maintain balance: they don’t want him to get spoiled, but at the same time they feel like “you need to take everything from life.”
We had sushi for dinner, and it was already dark outside. The children, as always, objected a little and each went to their own room to do their homework. We settled down on the couch and I asked Jacob and Leah how their outlook on life had changed since that day in New York ten years ago. When the doctors with their tests turned their lives upside down.
“None of us knows how long we will live, whether you have a terminal diagnosis or not. One morning you might get run over by a bus. So the main thing is to make good use of the time we can spend together and not put too much off for later,” says Jacob.
He emphasizes that Miles really lives here and now.
Leia chooses her words carefully. Emphasizes how difficult it actually is for her to accept this way of thinking, no matter how many years she puts into it.
“Of course, everyone understands how good it is to live in the present. But it’s a completely different thing when you know that there is a certain date, that you only have five or ten years.”
It had long been her priority to make Miles's short life as full as possible. But besides this, she and Jacob themselves strive to live as fully as possible in order to become more cheerful people and good parents.
“It’s not that we always say yes to whatever the kids ask, but rather that we just try not to put anything off and not to daydream. Like, ‘Oh, we’ve always wanted to go to Australia, but it’s so far away, so expensive. , and we have three children...” And we say: “Let’s do it!”
According to Jacob, he came to the conclusion that they were, in fact, lucky. It could have been worse. Both he and Leah worked extensively in developing countries, she in disaster medicine and he in international emergency relief. They saw the terrible conditions in which many people lived.
“It may sound terrible, but I say we are lucky. Of course, I would never wish for this myself. But everyone has their own problems in life. Not all of them relate to life expectancy. Apart from the fact that Miles has progeria, we are a completely normal, happy family. For that I am very grateful."
"One day, baby, we'll get old,
Oh baby we'll be old
And just think what stories,
We can tell you then.”
Asaf Avidan's song blasts from the loudspeakers at a climbing wall in southern Stockholm. Miles came straight from an algebra test, wearing a red sweatshirt and a black cap. His blue and yellow climbing shoes are several sizes too big for him, and he refuses his mother's help in putting them on. This is his third session with physical rehabilitation specialist Åsa.
“This is a great way to prevent joint problems. You've really figured out the trick, Miles, crawl like a little spider up the wall - whack! It’s great that you are physically active, otherwise my job would be much more difficult,” she says and smiles.
Miles is wearing a harness and has a bottle of water in his hand. He confidently walks towards the wall, toes turned slightly to the sides, hands on his hips.
A few days later I received a letter from Leah. She wrote that she would have to reschedule a planned photo shoot at the football field. Miles' femur popped out of its socket while he was playing football at school. This is the first clear sign that his body has aged and it's time to start a whole new course of rehabilitation. “It seemed like the whole world stopped. Although we knew that someday this would happen, you are never ready for this,” Leah wrote.
Miles becomes famous and his family sees only good things in this. They want people to see him and say, “look, it's Miles who has that disease,” rather than, “look how weird that man looks.” He himself is used to being looked at. I think it's normal, he says and shrugs.
“Sometimes someone comes up, usually children, and says they saw me on TV or in the newspaper. This is great".
Svenska Dagbladet: Do you want to convey something to everyone who will read this?
He smiles very widely and it is clear that he is missing one front tooth.
“Everyone should come to me and take a selfie. All! It'll be cool."
I ask the same question to his parents.
“Everyone should come and take a selfie with us,” Leia replies, and they roar with laughter.
Then she gets serious. Talks about Swedish politeness, which is sometimes inappropriate. A family goes to an amusement park and sometimes hears children asking their parents “what’s wrong with him?” and getting boos and stern looks in response.
“They don’t want to talk about it and explain it so that the child understands. They probably think it would be unpleasant for us.”
Jacob nods and explains that it's actually the other way around.
“It's not unpleasant, it's encouraging! It is much more unpleasant to hear whispers. Come up, ask, take a photo - whatever!”
Before we say goodbye, I ask Miles what he would do if he could do magic for a little while? What great wishes would he fulfill? He falls silent, but only for a couple of seconds. Then it shines.
“I would do it this way... so that I can always cast magic!”
Progeria
Progeria or Hutchinson-Gilford syndrome is an extremely rare fatal disease that is caused by premature aging and cell death. The body ages approximately eight times faster than that of healthy people. Progeria is caused by a genetic mutation that causes the prelamin A protein to not work correctly. Prelamin A is needed to keep the cell membrane stable.
Symptoms begin to appear in the first two years of life, and at about five years the child stops growing. He loses hair and subcutaneous fat, joints become ossified, and the skeleton becomes fragile. None of this affects intelligence.
The average life expectancy of such patients is 13.5 years, but some live into their 20s. The most common causes of death are stroke and heart attack. Today, approximately 100 children in the world live with this diagnosis. Miles is the only one in Sweden. The disease is not hereditary. Now there are no cures for it; its development can only be slowed down.
Werner syndrome is a lesser known form of progeria. This disease causes a person to show signs of aging earlier than would be appropriate for their age.
Werner syndrome, unlike Hutchinson-Gilford syndrome, is most often detected no earlier than 20 years of age.
15-year-old Nihal Bitla from the Indian city of Mumbai has Hutchinson-Gilford syndrome (progeria). Because of it, the boy's body ages 8 times faster than usual. Nihal's hair has already fallen out, deep wrinkles have appeared and his limbs have become flabby.
In addition to external signs of accelerated aging, the guy is plagued by health problems.
His joints have lost flexibility, his endurance is deteriorating from year to year, and dislocations are becoming frequent.
Srinivas Bitla, Nihal's father:
My son began to have spots on his body from an early age, but not from birth. It seemed to us that they were not dangerous. But his condition worsened, and we turned to doctors. They said it was a genetic disease.
Surprisingly, his brain remains young.
Now the teenager is interested in toy robots, the Internet and drawing.
His 11-year-old sister Vaishnavi helps him with his homework, while Nihal is home-schooled.
Nihal Bitla:
I walk and play with my sister, she takes care of me. If someone starts teasing me, she will deal with the offender.
The boy once went to school and at first even got along with his peers. But after the release of the Bollywood film “Paa” (“Daddy”) about a boy with progeria, Auro, Nihal’s peers began to tease him because of his unusual appearance.
Srinivas Bitla, Nihal's father:
They even laughed at him outside of school. Nihal could not bear it and refused to attend classes. In addition, his health was deteriorating. So we decided to homeschool him.
Progeria is incurable. Nihal realizes this, so he made a wish list.
Nihal Bitla:
I have 3 big dreams. At first I wanted to drive a Lamborghini. I succeeded. Soon I will see the android robot ASIMO. And all that remains is to visit Disneyland Park. Of all the rides, my favorite is the huge Mickey Mouse Ferris wheel!
The Progeria Research Foundation in Boston is developing a drug against cardiovascular complications in order to somehow make life easier for patients. In December 2014, Nihal also underwent treatment with this drug in Boston. The drugs worked, the boy’s health improved noticeably, his body became more flexible.
The Foundation seeks to draw public attention to the problem.
Audrey Gordon, Chairman and Executive Director of the Progeria Research Foundation:
According to statistics, there are 300-350 patients with progeria living all over the world. However, at the moment only 125 are known. Therefore, we intend to find the rest. And a third of undiagnosed children live in India. Our organization found only three children in this country. We helped them. We believe that all children suffering from progeria should receive treatment.
A baby was born in Bangladesh with a rare genetic disease - progeria. The newborn looks as if he is already 80 years old, which is why journalists have already dubbed him Benjamin Button (by analogy with the story told in the film of the same name)
Progeria is one of the rarest genetic defects. With progeria, changes occur in the skin and internal organs, which are caused by premature aging of the body. At the moment, no more than 80 cases of progeria have been recorded in the world.
A newborn boy from Bangladesh has deep wrinkles, sunken eyes, a shriveled body and thick hair on his back. At the same time, doctors say that at the moment there is no threat to the health of the mother and child.
The boy's parents, poor farmers from the village of Bhulbaria, are happy about the birth of their child. “The father will be happy about his second child as the boy looks like him,” the baby’s mother told India Times. The child's father, Biswajit Patra, confirms this: “We do not experience any discomfort due to the physical characteristics of the baby.
The main thing is that he is healthy." Unfortunately, the average life expectancy for childhood progeria is only 13 years.
And this is China
Qi Yuanhai was born absolutely normal. That is, with a human face. However, as a teenager he was struck by hyperplasia, a disease that causes excessive growth of certain tissues.
Yuanhai has developed bone tissue in his head. As a result, the face expanded in width, changed proportions - hypertrophied, in medical terms. And Yuanhai himself became like an alien. At least, they - the aliens - are portrayed something like this. Down to the complexion.
"Alien" lives in the village of Laotu in southwestern China (Laotu village in Chongqing, southwestern China). I had never consulted a doctor about my appearance before, nor was I treated for hyperplasia with anything. But now, having reached the age of 53, he was worried and wanted to become more like earthlings.
Together with his older brother, he is raising money for treatment, as reported by the British newspaper The Sun. His dream is to figuratively return to Earth after undergoing plastic surgery.
Based on materials from the network
Rupesh Kumar from Hanumanganj (India) is only 21 years old, but he looks like a 160-year-old man. A man is aging eight times faster than the average person due to a rare disease. His appearance caused such a stir that his parents were even offered to sell Rupesh to the circus.
This rare disease, known as Hutchinson-Gilford progeria, affects only one in eight million people, and Kumar is the oldest of them.
"The Curious Case of Benjamin Button" is a story about a man who was born with the body of an old man. Rupesh began showing signs of the disease in early childhood. His father Ramapati, a farm labourer, said: “It all started with headaches and stomach pain when Rupesh was very young. We took him to several doctors, but none of them could diagnose him. They prescribed a couple of painkillers and sent him away. us home."
As Rupesh grew up, his parents began to notice strange changes happening to his body and appearance. “Over time, my son’s head became abnormally large and he began to lose weight rapidly,” says his father.
About five years ago, several people visited their village ostensibly to help Rupesh.
“I thought that they were good people who wanted to help with my son’s treatment. But I was shocked when they said that they wanted to buy him and show him in the circus!” Rupesh’s father is indignant. “They offered us 300,000 rupees (more than 4 $500) I politely asked them to leave. I would never give them my child even if they offered me 10,000,000 rupees (approximately $155,000)."
Rupesh's mother Shanti Devi was also indignant: “How did they even dare to offer us this? It’s simply inhumane!”
Unfortunately, Hutchinson-Gilford progeria is incurable, but Rupesh managed to exceed all doctors' predictions when he crossed the 20-year mark. His doctor Yungathar Pandey says: “He has progeria, for which there is still no cure.”.
“Most people with progeria rarely live beyond 13-15 years, but in some cases, like Rupesh, these people can live up to 21 years,” says the doctor.
Rupesh first began showing symptoms of progeria at age 2, when his skin began to sag, his hair began to fall out, and his growth was stunted.
According to the doctor, Rupesh's muscles are also weakening. As with other cases of progeria, Rupesh's eyes became sunken and his skin became sickly pale. “This disease occurs due to gene mutation,” explains the doctor.
Rupesh's desperate parents have appealed to the Indian Prime Minister for help, but have yet to receive a response. In the meantime, local non-profit organization Ashotosh Memorial Trust is helping to provide Rupesh with the medical care and attention he needs.
Translated and adapted by: Marketium