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.
Mom discovers son kneeling in prayer in Walmart
One day, young Braydon went shopping with his mother at the large US grocery store Walmart. But it wasn’t long before his mother became frightened when she discovered Braydon had vanished.
His mother found him after frantic, terrified searching for a few minutes.
Her initial thought was to chastise him for abandoning her. Yet she paused to consider why when she noticed him kneeling and praying in front of a sign board. She then looked at the wall more closely.
The worst nightmare of any parent is losing a child, even if it’s just temporarily. It is, of course, not unusual, particularly in areas with high pedestrian traffic, such shopping centers and huge grocery shops. At least for Braydon’s mother. She was eager to finish her shopping at Walmart, one of the biggest and busiest retail companies in the world, as soon as possible.
Faith Tap reports that Braydon’s mother stated, “I had to run into Walmart.” I looked back to make sure my son was by my side.
But he wasn’t. In a matter of moments, Braydon had plotted to distance himself from his mother.
When she finally located him, Braydon was knelt in front of a sign. He was in prayer. She asked him what he was doing since she was taken aback. But as she drew nearer to the board and looked, she was able to make sense of her son’s behavior.
It said, “Every second counts,” on the board. There were photographs of missing children next to those words. After seeing the board and leaving his mother’s side, little Braydon prayed to God that the kids would go back to their homes.
The heartwarming picture and the narrative that went with it went popular on the internet very fast. After seeing Braydon’s tale, the Facebook page for Aubrey Jayce Carroll, an adolescent boy who has been missing since 2016, made the decision to write a tribute to him.
“I would like to thank you for your prayers for these children, even if I am not sure who this little guy is. Aubrey Carroll is one of my cousins out there. I’m definitely impacted by this. I would love to thank this child in person if I knew where he was or who he was.
Since then, Facebook users have shared the picture of Braydon kneeling in front of the board more than 115,000 times.
You will agree that 800,000 or more children in the US are reported missing each year, according to the National Center for Missing and Exploited Children.
It’s best summarized by a Facebook commentator on the image: “It truly doesn’t matter whether or not you believe in God. This young person in Walmart was thinking of other people and trying to help as much as he could. If more people emulated him, the world would be a better place.
Well done, mom! You’re doing something right—foundation is essential!
Bless his heart, God. I adore how deeply his faith permeates his consciousness.
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