They are born old and die young. They spend their childhood trapped in the bodies of old people. They live, hopefully, just over 20 years old. These are four real-life cases.
Sadly, none of the four became younger with the passage of time as the protagonist of the story does. Francis Scott Fitzgerald from 1922 or its 2008 film adaptation with Brad Pitt. “The Curious Case of Benjamin Button” tells the story of a man who is born old and little by little becomes younger.
They suffer from progeria, or Hutchinson-Gilford progeria syndrome, a very rare progressive genetic disorder that causes accelerated aging in children from the first two years of life.
He Dr Yugantar Pandeya professional who treated Rupesh, the second case in this article, said that most people who suffer from it die when they reach the age of 13-15, but in some cases, like that of his patient, they live until they are 21.
For its part, the Dr. Hiba Zaarouraan Israeli doctor in the last case on the list, made it clear that her patient needed to be followed closely by a cardiologist for the “risk of heart problems and strokes” and by a gastroenterologist for his “growth problems.”
According to the National Organization of Rare Disorders, the prevalence of progeria is approximately 1 in 20 million, meaning that at any given time there are approximately 400 children living with the disease worldwide.
“The Curious Case of Benjamin Button” fantastically shows the problem.
As of December 2020, the Progeria Research Foundation’s International Progeria Registry identified a total of 131 children and young adults with progeria worldwide.
However, there are specialized media, such as MedlinePlus, that differ in the number: they say that it occurs in 1 in every 4 million newborns.
The first media case of progeria
The name of the disease was sadly popularized in 1981 with the literary super-bestseller “When Bad Things Happen to Good People” written by Rabbi Harold S. Kushner after the death of his son from progeria.
Harold Kushner holds his son Aaron.
TO Aaron Kushner He was diagnosed with the disease at the age of 3, and at 10 his body was already like that of a 60-year-old man. Two days after turning 14, and weighing only 11 kilos, Aaron died. The year was 1977.
“Like many children who feel they are going to die soon, he was afraid of being forgotten because he didn’t live long enough, not knowing that parents never forget. I promised I would tell his story,” the rabbi told the alumni magazine Columbia College Today. in 2008.
A young man who passed 20
Rupesh Kumar, an Indian boy from northern India, was one of the oldest people with Hutchinson-Gilford in the world. Weighing 20 kilos, the Indian surpassed the 20-year barrier.
In an interview, his father said that his son’s first symptoms of progeria occurred when Rupesh was two years old. It all started with severe headaches and stomach pains.
Over time, Rupesh’s head grew “abnormally” and the boy began to lose weight drastically. Furthermore, her hair and his skin were constantly falling out.
Rupesh crossed the 20-year mark.
Adding to the suffering of the Kumars was the inhumane offer they received for their son to perform in circuses. “They offered to pay us 300,000 rupees ($3,594). I told them politely to leave. That I would never give up my son even if they had offered me 1,000,000 rupees,” the man revealed in 2017.
Seven years ago Rupesh was believed to be the oldest progeria survivor following the death of South African Leon Botha at the age of 26.
The disease in Latin America
In 2016, a case of progeria became famous in Latin America in a girl who died at 12.
In colombia, Karen Ordóñez He appeared on the news talking about his problems at school due to his illness.
Karen Ordóñez went to school like any girl.
Ordóñez said that she loved having friends and that her classmates used to think that she was always crying when in reality it was that due to her lack of eyelashes her eyes were constantly crying.
A recent detection
The first case of progeria in Israel occurred only last year at the Rambam Medical Center in Haifa. It was a two-month-old baby who had begun to notice “unusual things on her skin,” the Times of Israel reported.
In addition, the baby had facial characteristics typical of those who suffer from progeria: a head larger than his face, a small jaw and mouth, thin lips, a beak-shaped nose, and large eyes whose eyelids cannot cover.
Dr. Hiba Zaaroura who treated the baby.
His aging process was treated with lonafarnib, an oral farnesyltransferase inhibitor, the only drug available to date to treat progeria and which can only be used in patients at least one year old.
Little is known about the medication. It came out in November 2020 and, although nothing has been said, it is believed that it can add two years to the life expectancy of a patient with progeria.
