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.
Her husband used to beat her frequently, so she took her children and ran away from home. She had nowhere to stay and not much money, so she decided to build a house with her own hands. Only her children helped her. All the neighbors laughed at her.
AuthorAvokadoReading3 minViews6.6k.Published by31.03.2024
They say that if life hands you lemons, make lemonade. We all know that this is easier said than done, yet nothing is truly impossible if we set our minds to something and put in a lot of effort to achieve it.
Cara Brookins ended up in a violent marriage. She left her husband, took her kids with her, and started over in a new house since she was a mother of five and understood she had to protect her kids from the toxic environment they were made to live in. How was it accomplished by her? by creating her own construction blueprints and viewing YouTube videos that demonstrated various building skills, such as installing plumbing, running a gas line, laying a foundation, and erecting walls. It sounds amazing, doesn’t it?
Now that she’s thinking about it, she acknowledges that it has been impossible the entire time.
Cara, a computer programmer analyst, came up with the idea to build her family’s new home from the ground up because she couldn’t afford to buy a house big enough for all of her children at the time she started building it in 2007.
Cara described the feeling as being that “if anyone were in our situation, they would do this.” “I know it sounds crazy now, but no one else saw it like this.”
She borrowed about $150,000 for construction and paid $20,000 for an acre of land.
Her children helped build their 3,500-square-foot home; the eldest was only two years old at the time and the youngest was seventeen.
Since there was no running water on the property, her 11-year-old daughter Jada had to use buckets to carry water from the neighbor’s pond. Her son Drew assisted her in creating the plans. After that, she combined it with concrete bags weighing eighty pounds to create the foundation mortar.
The children would visit the site and assist every day after school. This tenacious mother paid $25 per hour to a part-time firefighter with building experience to complete the most difficult tasks. He was “a step ahead of us in terms of knowledge,” she recalled.
The family finally moved into Inkwell Manor on March 31, 2009, which was named in honor of Cara’s aspiration to become a writer.
“We felt ashamed that the only option available to us was to construct our own shelter,” Cara remarked. “We weren’t particularly proud of it, but it ended up being the best thing I could have done for myself.”
“Anything is possible for you if I, a 110-pound computer programmer, can build a whole house,” she exclaimed.
She continued, stating, “Select one goal and stick to it. Choose a big project you’ve always wanted to do, start small, and take the others who also need to recover with you. That has a great deal of power.
This isn’t it one of the most amazing tales you’ve heard recently?
If this family’s tenacity inspires you as much as it does, please SHARE their amazing tale on Facebook with your loved ones!
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