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.

Audience in awe as children’s Christmas recital turns into surprising shake dance

Oh, these tiny stars will make you fall in love with the holidays even more. You may think how you’ve seen lovely Christmas performances over the years, but once you get to see these adorable little humans, they will certainly become your number one holiday sensation.

The whole show they put on will make your heart and body dance along. Everyone is having so much fun that we wonder who these concerts are actually made for, the parents, or the kids themselves. This video is perfect for lifting up the holiday spirit and making you enthusiastic about everything it brings along.

We have the most adorable kids, a perfectly decorated stage, some nice costumes, iconic Christmas song, and it seems all this is the key to perfection.

YouTube

It’s obvious from the footage that this performance took place some years ago, but thanks to the social media it went viral again. Maybe the students of the Saint Elizabeth Child care facility in Jersey City, New Jersey that were very little at that time will see themselves now when they are older and it will bring pleasant memories.

It’s so fun how they take the stage one by one, are lined next to each other, but are not really in a perfect sync, which makes them quite adorable. Moving back and forth in different rhythm but still with great enthusiasm, they are the cutest little dancers. It’s adorable how they wave their parents hi when they spot them among the crowd.

Audience in awe as children’s Christmas recital turns into surprising shake dance

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Oh, these tiny stars will make you fall in love with the holidays even more. You may think how you’ve seen lovely Christmas performances over the years, but once you get to see these adorable little humans, they will certainly become your number one holiday sensation.

The whole show they put on will make your heart and body dance along. Everyone is having so much fun that we wonder who these concerts are actually made for, the parents, or the kids themselves. This video is perfect for lifting up the holiday spirit and making you enthusiastic about everything it brings along.

We have the most adorable kids, a perfectly decorated stage, some nice costumes, iconic Christmas song, and it seems all this is the key to perfection.

YouTube

It’s obvious from the footage that this performance took place some years ago, but thanks to the social media it went viral again. Maybe the students of the Saint Elizabeth Child care facility in Jersey City, New Jersey that were very little at that time will see themselves now when they are older and it will bring pleasant memories.

It’s so fun how they take the stage one by one, are lined next to each other, but are not really in a perfect sync, which makes them quite adorable. Moving back and forth in different rhythm but still with great enthusiasm, they are the cutest little dancers. It’s adorable how they wave their parents hi when they spot them among the crowd.

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Although they are only supposed to move along the melody, many of the kids can’t contain themselves from singing out loud. The all time favorite hit “Rockin’ Around the Christmas Tree” is the background song that makes the overall impression stronger.

In 1958, songwriter Johnny Marks wrote the iconic song for Brenda Lee when she was only a 10-year-old girl and whose vocal skills were already considered outstanding.
Some of his other hits are “Rudolph the Red-Nosed Reindeer” and “Holly Jolly Christmas.”

The song was a quick hit and its position as a Christmas classic is perhaps best cemented by the 1990 film Home Alone in which the main character uses it as the soundtrack to his fake Christmas party meant to scare away the burglars.

YouTube

Seeing the beautiful and innocent kids holding hands and then waving their arms up in the air fills our hearts with joy. As they leave the stage, the proud parents praise them  with loud applause.

Watch the performance in the video below.

Rocking Around The Christmas Tree - Kids

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