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.
The acapella rendition of “You Raise Me Up” will give you goosebumps
It’s no secret that music resonates with many of us, almost as if it possesses its own unique language.
For centuries, as long as humans have been able to listen, music has held a significant place in our cultures, stirring deep emotions and inspiring countless individuals. While musical styles evolve over time, some songs remain timeless, continuing to evoke strong feelings and find appreciation long after their initial release.
One of the remarkable aspects of music, and songs in particular, is the unique interpretation each artist brings. A perfect example of this is “You Raise Me Up”, a classic first introduced in 2001 and later covered by notable artists like Josh Groban in 2003 and Westlife in 2005
Chances are you’ve heard this song, if not, it’s definitely worth a listen. The fact that over 100 artists have covered it speaks volumes about its enduring appeal. Among all the versions of this cherished ballad, one that stands out for its haunting beauty is performed by Brigham Young University’s Vocal Point.
Founded in 1991 by BYU students Dave Boyce and Bob Ahlander, BYU Vocal Point is a nine-member acapella group that quickly gained immense popularity on campus and finished fifth in NBC’s third season of The Sing-Off.
In 2018, they announced a record deal with Universal Music Group’s classical label, Decca Gold. Jason Bromley, one of the group’s members, remarked: “We’re ordinary college students doing extraordinary things”.
Their cover of “You Raise Me Up” is a true testament to their exceptional talent, creating unforgettable musical moments.
The accompanying video features the group harmonizing against a stunning mountainous backdrop, merging their voices in an awe-inspiring manner. Still skeptical? Check out the mesmerizing rendition of BYU Vocal Point in the video below:
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