Meet Twins with the Rare Benjamin Button Syndrome, Who Became Symbols of Resilience

In a small Brazilian town, there resides an extraordinary duo of identical twins named Elis and Eloá. Their story serves as a beacon of resilience and the remarkable power of the human spirit. Afflicted with Hutchinson-Gilford Progeria Syndrome, a rare and fatal genetic disorder causing accelerated aging, these twins confront their adversities with remarkable grace and strength, earning admiration from people worldwide.

Understanding Hutchinson-Gilford Progeria syndrome

HGPS stands as an exceptionally rare disorder, impacting roughly 1 in 20 million newborns globally. Marked by rapid aging from early childhood, individuals with progeria often display growth delays, diminished body fat and hair, prematurely aged skin, joint stiffness, and severe cardiovascular issues. Typically, those with HGPS have an average life expectancy of about 14.5 years, though some may extend into their late teens or early twenties. This syndrome gained public attention through the film The Curious Case of Benjamin Button.

The condition is caused by a mutation in the LMNA gene, which produces the lamin A protein responsible for maintaining the structural integrity of the cell nucleus. The mutation results in the production of an abnormal version of the protein, called progerin, which causes cells to become unstable and die prematurely.

Elis and Eloá’s journey

Elis and Eloá swiftly captured attention because of their distinctive medical condition. Despite the physical hurdles imposed by progeria, their contagious smiles and steadfast optimism have emerged as beacons of hope and inspiration. Guilherme and Elismar, the twins’ parents, have dedicated their lives to offering the utmost care for their daughters, striving to ensure they experience as normal a life as feasible within the confines of their condition.

The family’s path has been far from easy. Their daily life is filled with demanding medical routines, including physiotherapy, aimed at addressing joint stiffness and preserving mobility. Despite these challenges, Elis and Eloá approach each day with remarkable bravery and an unparalleled enthusiasm for life, which is truly remarkable.

A global community of support

Elis and Eloá’s narrative has touched hearts worldwide, sparking a surge of solidarity from individuals and groups committed to promoting awareness about progeria and backing research endeavors. The Progeria Research Foundation, a pivotal entity in this realm, has played a vital role in propelling research forward and furnishing assistance to families grappling with the condition.

Through social media platforms, the twins’ journey is shared with a broad audience, fostering a sense of community and solidarity. Their family’s updates, documenting both the highs and lows of their daily lives, provide invaluable insights into the realities of living with progeria, while also spreading a message of hope and perseverance.

Advances in research and hope for the future

In recent years, there have been remarkable advancements in comprehending and addressing progeria. A notable milestone occurred in 2020 when the U.S. Food and Drug Administration (FDA) granted approval for the first progeria treatment: lonafarnib. This medication has demonstrated efficacy in prolonging the lives of children with progeria by mitigating the accumulation of progerin in cells, thereby decelerating the disease’s advancement.

Though a cure remains elusive, ongoing research presents promising prospects. Scientists are delving into gene-editing methodologies, like CRISPR, as potential means to rectify the genetic mutation at its root. For families such as Elis and Eloá’s, these breakthroughs offer a ray of hope for the future.

And in our other article, we recounted the remarkable story of a girl born without a nose, affectionately dubbed “Voldemort,” who refuses to let her differences define her.

Stockard Channing: The star from ‘Grease’ is 80 & looks unrecognizable now

After all these years, I don’t think there’s ever been a more charismatic or relatable Rizzo than Stockard Channing.

Channing was a great artist and her singing was just fantastic in Grease – but nowadays, the 80-year-old looks almost unrecognizable.

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The first movie I ever saw Stockard Channing in was called The Big Bus and I thought it was hilarious. But back then, I could never imagine that she would go on and have such a remarkable career.

Today, Stockard Channing is best known for her iconic portrayal of Betty Rizzo in Grease, the 1978 American musical romantic comedy film based on the 1971 musical of the same name. Like many before me have pointed out, Channing was by far the best Rizzo out of all that have played the part.

Many probably also recognize Channing from the series The West Wing, where she starred as First Lady Abbey Bartlet. The experienced actress was praised for her instant chemistry with Martin Sheen, who played President Josiah Barlet.

“It just worked,” she told Entertainment Weekly in 2020.

“We had this chemistry from the beginning. I don’t know what it was, but we had it and it didn’t go away. It was a happy accident.”

Starring as Beth Rizzo

But let’s take a deeper look at the highlight of Channing’s career. Because in the name of honesty, she hasn’t appeared in any major motion picture since Grease, even though she has continued to act in films and on Broadway.

The 13-time Emmy Award nominee and seven-time Tony Award nominee appears to be totally fine with being most remembered for her portrayal of bad girl Beth Rizzo, one of the Pink Ladies in Grease.

But is that really the whole truth?

Back in 1973, Channing had little breakthrough starring in the TV-movie The Girl Most Likely to…, a black comedy about revenge.

“A lot of people talk about the G-word [Grease] and all of that, but back in the day, I had as many people stop me in the street about that one movie. Because it’s about revenge, and people would sit in their living rooms and go, ‘Oh, I’m the only person watching this’ or ‘this person understands me.’ I’m not kidding. It was a million years ago, and then it was the highest-rated movie of the week. Revenge always works,” she says.

According to Channing, she has only watched Grease only two times.

“I used to be grumpy about Grease because I thought it was a kids’ movie or something. But now it’s sort of amazing. I’m very proud of it,” she told The Times in 2019.

The Manhattan-born actress was 33 years old when she played Rizzo and playing a high school teenager wasn’t so easy for her.

Wikipedia Commons

”I was so much older than she was in life, but I could not think about that so I sort of threw myself back to what I felt when I was her age over, even younger. The complexity of adolescents and hormones and sexuality and all of that other stuff. Seeing that I really was older I think that added to the isolation of Rizzo,” Channing told Broadway World.

Channing, who became interested in acting at an early age, was thrilled when she was offered the role of Rizzo, and her performance made her a top-ranking star in the late 1970s. She earned a People’s Choice Award for Favorite Motion Picture Supporting Actress, but the New York native had difficulty achieving similar success after Grease.

The beloved actress was handed two sitcoms of her own, Stockard Channing in Just Friends (1979) and The Stockard Channing Show (1980), but neither was successful and her career halted.

But with her look of Elizabeth Taylor and air of calm confidence, Channing didn’t give up and she continued to work as an actress, appearing in many highly-praised movies and stage plays. Her latest appearance on the big screen came was in Angry Neighbors, which premiered in 2022.

Stockard Channing in 2011 / Wikipedia Commons / Sean Koo

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