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.
NASA Confirmed Saturn’s Rings Are Going to Disappear Completely in 18 Months
The sky often treats us to new wonders like meteor showers, intriguing planets, and captivating lunar eclipses. However, it’s not just about new arrivals in space — some things are saying their goodbyes and Saturn’s famous rings are on the way out. Scientists are closely monitoring this phenomenon.
Soon, Saturn’s rings are going to disappear from our view.
© NASA / JPL / Space Science Institute / Wikimedia Commons, © Public domain
Those iconic rings we’ve admired from Earth will no longer be visible in just 18 short months. These rings are composed of a mix of icy and rocky bits, often dust-coated, encircling the sixth planet in our solar system. But the reality is, even though it might not seem soon in human terms, they are on the path to becoming invisible to us by 2025, a cosmic blink of an eye. While the full disappearance will take millions of years, the show in the night sky won’t last much longer.
© NASA / JPL-Caltech / SSI / Wikimedia Commons, © Public domain
Here’s why this is happening: as Saturn orbits the Sun, its tilt angle will drop to zero on March 23, 2025. When this tilt reaches zero, it essentially means that Saturn will present itself perfectly on its side to us here on Earth. Saturn is about 746 million miles away from us at its nearest point, and when it’s sideways, we won’t see its iconic rings. This unique alignment will occur again on October 15, 2038, and then in quick succession on April 1 and July 9, 2039.
© NASA / ESA / A. Simon (Goddard Space Flight Center), M.H. Wong (UC Berkeley), OPAL Team / Wikimedia Commons, © Public domain, © NASA / JPL / Wikimedia Commons, © Public domain
After Saturn’s rings disappear in 2025, we won’t get a full view of them again until 2032. Saturn’s rings are tilted towards our planet at an angle of nine degrees. By next year, this tilt will reduce to only 3.7 degrees. We haven’t witnessed this disappearing act since September 2009; prior to that, it hadn’t occurred since February 1996. So, it’s a relatively rare event for skywatchers to witness.
NASA captured an image of an unusual celestial object resembling a question mark.
© Joseph DePasquale (STScI), Anton M. Koekemoer (STScI) / NASA, ESA, CSA
NASA’s James Webb Telescope has spotted a mysterious object shaped like a question mark. Although the true nature of this object is currently unknown, scientists have some speculations about it. This intriguing discovery has piqued the interest of astronomers and researchers eager to learn more about this enigmatic celestial feature.
© Joseph DePasquale (STScI), Anton M. Koekemoer (STScI) / NASA, ESA, CSA
The object is part of the Herbig Haro 46/47 star system, where two young stars orbit each other under the influence of gravity. These stars are located in the Vela Constellation, approximately 1,470 light-years away from Earth. The object’s distinct question mark shape is of a reddish hue, signifying it is more distant than the other stars in the image.
The true nature of this celestial entity remains a puzzle, but its unique shape and color provide some hints. It may represent a distant galaxy or even the result of two galaxies colliding, which gives it the distinctive question mark appearance. This interpretation is supported by experts at the Space Telescope Science Institute (STScI) in Baltimore.
The search for extraterrestrial life continues, and with technological advancements and our understanding of the cosmos, we may one day make significant discoveries. In the meantime, exploring the wonders of the starry sky through cosmic images can be a truly enchanting experience.
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