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.
Dakota Johnson shared a funny story about how her mom, Melanie Griffith, introduced her to Barack Obama, and it was a bit embarrassing.
Moms are known for embarrassing their kids. But if you’re Dakota Johnson and your mom is famous actress Melanie Griffith, the embarrassment level goes up when she introduces you to the President of the United States.
While talking about some of her past movie roles, like The Social Network from 2010, Dakota shared with Vanity Fair how she felt a bit embarrassed during her first meeting with Barack Obama, all because of her mom.
“One time, I was with my mom, and we were meeting Barack Obama, which was a big deal,” Dakota recalled. “He was talking to her, and she said, ‘Oh, Mr. President, this is my daughter. She just did a movie. She’s an actress too. She was in The Social Network.’”
But instead of stopping there, her mom added an embarrassing detail, telling the former president, “She’s in her underwear.” In the movie, Dakota plays a college student who has a fling with Justin Timberlake’s character, Sean Parker, and in one scene, she wears an off-the-shoulder Stanford sweatshirt and bright red underwear.
About the experience, Dakota joked, “And I died. I died inside.”
In the same video, she talked about her thoughts before working with Justin Timberlake on The Social Network. “Are you kidding? I was just 19 and straddling Justin Timberlake and whipping him in the face with my hair,” Dakota said when asked if she had any ideas about acting with the former boy band member. “I definitely had some preconceived notions, but he was really nice and welcoming, especially since I was just a stranger.”
Leave a Reply