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.
Dad sparks online debate after cradling daughter’s head for 45 minutes so she could sleep during a flight
People are frequently seen debating something or other on the internet these days.
Given that it essentially brought millions of people together in one location and allowed them to freely express their emotions, it was unavoidable. But they were always going to spark a heated argument, regardless of how diametrically opposed they were.
Even while contentious images and videos are becoming commonplace on the internet, it doesn’t mean it’s not worthwhile to check them out whenever they appear. Thus, when I saw a photo of a father and his dozing kid shot during a flight—one that, incidentally, has sparked a variety of comments—we had to share it.
The discussion started when Reddit user u/therra123 posted a wonderful photo of a father and daughter in the r/MadeMeSmile thread.
An image of a girl curled up on her aisle seat during a trip was submitted by the user. Her father had put his palm under her cheek, preventing her head from resting on the armrest, which is, I’m sure anyone who has used one, a quite harsh and coarse pillow.
“This man kept his hand in this position for 45 minutes so his daughter could sleep well,” says the Reddit caption that goes with the image.
We have to say at this point that, in our perspective, this appears to be no more than a father going about his business. Although the post was appropriately labeled “wholesome moments,” some Redditors disagreed.
Remarkably, the father’s activities drew criticism; some individuals wrote merely to point out that he could have done it more skillfully.
The widely shared post received approximately 60,000 likes and thousands of comments, with responses like these:
“It seems like… I believe there must be a better approach.
“Do you not have your towel?” said another. The most crucial item you can pack is a towel.
“Shows a distinct lack of creative problem solving,” said a third person. You claim that after 45 minutes, you were unable to come up with a workable answer. Hey!
A fourth person wrote, “Seriously. Fold up a sweatshirt, and presto! Instant-pillow. Here’s an absurd idea: request a blanket and pillow from a flight attendant.
Others, meanwhile, were more understanding of the father and his gesture. By coincidence, we also find ourselves in that category!
What about you, though? Was there anything improper, in your opinion, with the father using his kid as a makeshift pillow throughout this flight? Tell us in the comments below.
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