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.
Malia Obama, 25, debuted a new moniker as she began her Hollywood career
Growing up in front of the eyes of the public isn’t something Malia Obama is not familiar with. Being the daughter of the former president of the United States, Barak Obama, she has spent her life under the limelight, and even today, the media is interested in her every move.
The 25-year-old just presented her directorial debut, The Heart, at the Sundance Film Festival. In the Sundance Institute’s “Meet the Artist” spotlight video, Malia Obama revealed she was going by the name Malia Ann, thus ditching her moniker.
Malia, who was born Malia Ann Obama on July 4, 1998, has her middle name honoring her paternal grandmother, who died from ovarian cancer at the age of 52 in 1995, and now, she has dropped her last name in favor of her middle name.
Speaking of the short film for which she served as both director and screenwriter, Malia said. “This is an odd little story, somewhat of fable, about a man grieving the death of his mother after she leaves him an unusual request in her will.” Further, in the YouTube clip of the short film, she wrote, “The film is about lost objects and lonely people and forgiveness and regret, but I also think it works hard to uncover where tenderness and closeness can exist in these things.”
The Heat isn’t her first attempt into the profession. Previously, the Harvard grad worked in the writers’ room on Donald’s Amazon Prime show Swarm, co-writing the fifth episode, “Girl, Bye.”
“She’s a very professional person,” Swarm‘s co-creator Janine Nabers said Malia in a January 2023 Vanity Fair interview. “She’s an incredible writer and artist. She made significant contributions… She’s very, truly committed to her craft.”
Swarm‘s executive producer Stephen Glover also spoke of Malia. “We can’t be easy on her just because she’s the [former] President’s daughter,” he told Vanity Fair. “No, she is really down-to-earth and cool. So it’s not an issue at all.”
Malia Obama isn’t the first celebrity who made the decision to ditch their family name. Other celebs have done that before, including Nicolas Cage, who changed his last name from Coppola, and Angelina Jolie, who dropped her surname, Voight.
For her directorial debut, Malia looked cozy, with minimal makeup, her curly hair down with small braids scattered throughout.
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