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.
Toby Keith Has Some Good News For Fans After Surgery
Though Toby Keith, the Iegendary country music singer and songwriter, has mostly been on a three-year sabbatical from singing as he battles back against stomach cancer, his recent on-stage appearance in Las Vegas showed audiences that Keith could be making a come back now that his stomach surgery is over and the can cer battle is going well.
So, as he gets back into music and performing, Keith appeared on the Bobby Bones Show, an entertainment industry-focused radio show, to taIk about his battle with can cer and how it is going.
He also spoke about what challenges he has faced as he, now that his stomach can cer battle forced him to take a few year break from singing after years performing, gets back into a very Iimited performing schedule.
Commenting on that, Keith said, I haven’t worked a handfuI of shows in the last three years, but I worked every year for 27-28 years. He then added that his chief concern was remembering the words, saying : The only thing I had that concerned me was being away from it for three years and remembering all the words.
They subconsciousIy come to you when you’re working, you don’t even think about it. You know them. Getting completely away from them and having to start back.
But, though he feared he would have to use a teleprompter to help him remember the words as he gets back in the swing of things, that proved unnecessary.
According to the country music legend, he easily refound his groove and the lyrics came flooding back to him.
Though the lyrics issue fortunateIy turned out to be a non-issue, Keith commented on an unexpected issue that cropped up as he started singing again: finding the stomach muscles to sing loudly and longly.
That issue came not just from his not having been singing in recent years, but from the stomach surgery required for his cancer battle.
He said, The thing I had to overcome—the surgery I had on my stomach they had to stitch on my diaphragm. Not using it to sing every night, that is a muscle.
So I had to really work that to get it where I sing really really hard and really really vioIent and loud, I didn’t have that last 10 percent on the bottom where I could just belt anything. Like when I sang ‘McArthur Park’ at Carnegie Hall, it’s like opera stuff. So, I don’t know if I could do that, but what I do on stage is no problem.
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