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.
Tesla Driver Reveals Jaw-Dropping Electric Bill After 12 Months: Shocked Reactions Pour In
People can’t believe how much it cost him in electricity to run his Tesla for a whoIe year. It wouldn’t be silly to think that the costs of running a Tesla might be slightly extortionate when taking a look at how much the cars cost in the first place. And while electric cars are looking like the way forward, people might be put off by the rising eIectricity costs.People were left baffled on X, formerly known as Twitter, when a man shared his electric bill after a year of driving the car – and the figure was certainIy surprising.We all know that petrol and diesel are definitely not the cheapest ways to get around, but how much does it really cost to run one of Elon Musk’s motors? The man captioned the post: “First time I have had a bill within the last 12 months. “This sucks.”
He was writing sarcastically, of course, after seeing that his electricity bill was actually in single digits. After a year? You did read that right. The balance due was just $2.37 (£1.89)– rather than the hundreds of dollars you might assume it costs to charge your car regularly over a month.
But how on earth did it only cost so little?
Well, upon taking a closer look, it appears it’s still a pretty expensive process.The user’s cover photo displays a Tesla Powerwall, which is a huge battery that loops into your home’s power and is really handy to have if you have got solar panels.
It means that the solar panels which power your house, also store excess charge in your Powerwall, which charges your car. But these don’t come at a small cost, as you may have presumed. The Powerwalls start at around $11,500 (£9,000), but can range up to $15,000 (£11,800), according to Forbes.
If you plan to keep your Tesla for a number of years, which evens this figure out a bit, maybe there’s a case for it working out in the long-run to be borderline cost effective.
That’s if someone could hand us nine grand, please?
People joked in the comments about the Tesla owner’s sarcastic post, one said: “Damn my dude post a GoFundMe the community will rally around you I’m sure.”
Another said: “That’s horrible.
“My condolences.”
Tesla went viraI again this year after releasing their latest creation: the Cybertruck.
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