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’s $5 Million Inheritance: Greedy Brother and Aunts Benefit, I’m Left with Just an Envelope
It is not rare that families fracture over a loved one’s assets. It sometimes goes to the extent that those set to inherit may not see eye to eye. A woman shared a story of her mother and the inheritance she left after her passing. The woman started her story saying how she was the one who took care of her mother who battled cancer. “Mom was always my best friend, so naturally, I was going to be there every step of the way while she battled this illness,” the woman wrote. However, as she was always there for her…
It is not rare that families fracture over a loved one’s assets. It sometimes goes to the extent that those set to inherit may not see eye to eye.
A woman shared a story of her mother and the inheritance she left after her passing.
The woman started her story saying how she was the one who took care of her mother who battled cancer. “Mom was always my best friend, so naturally, I was going to be there every step of the way while she battled this illness,” the woman wrote.
However, as she was always there for her mother, her greedy brother and her aunts were only around when they needed something, usually when they wanted their bills paid.
“one aunt (while my mom was on a steady decline), she wanted mom’s “contacts” to sort out a new house for her. Because my mom owned a real estate agency. The audacity was unbelievable,” the woman wrote.
Sadly, her mom passed away.
The woman then recalled the day her mom’s will was to be read. All of her family, including her brother and her aunts, as well as her late mom’s lawyer were sit in the room that resembled a scene from a Hallmark movie.
“I was sipping a cup of weak tea from one of the chipped teacups when the lawyer dropped the bomb. Mom’s savings, about all $5 million of it, was to be split between my brother and my aunts. I choked back the tea, thinking what was happening in the name of heaven. Because I got nothing. Zip. Nada.
“I was sipping a cup of weak tea from one of the chipped teacups when the lawyer dropped the bomb. Mom’s savings, about all $5 million of it, was to be split between my brother and my aunts. I choked back the tea, thinking what was happening in the name of heaven. Because I got nothing. Zip. Nada,” the woman wrote.
At that moment, tears started rolling down her face and mascara drops stained her skirt while her brother and her aunts had a hard time hiding the smirk on their faces.
“‘How on earth could my mom have done this to me?‘ I thought, wiping my nose with the face of my hand. And then, as a classic overthinker, I began to wonder whether I cared enough for her during those final months,” the poor woman kept wondering.
Next, she could see the lawyer approaching her and handing her an envelope.
When she opened it, the woman saw an address written on a piece of paper. She had no idea what was going on.
At first, she thought it could be a location to a storage her mom wanted her to clear out. The lawyer, for one, stayed tight-lipped. He only reminded the the woman that she was the person her mom loved the most.
When she got to the address, the woman realized that her mom left her a gem of a home. The house in front of her was so beautiful it resembled one from a fairytale. Even the woman’s favorite flowers were planted in the yard.
“It turns out my mom knew all about how my brother and aunts were the biggest money drains. But she wanted me to have a place to build a future and a family. To make new memories in a place that clearly has her spirit,” the woman continued her story.
Another letter on the kitchen table in this new home explained that the mom left the money to her son and her sister fully aware they would waste it the moment they put their hands on it, but she wanted to teach them the value of family, which would likely come as a lesson once they spent all the money they inherited.
“But now, I’m standing in my new kitchen, drinking coffee from the coffee machine I always wanted, and I realize that mom’s love was never in the money — no. It was in this home, and I knew that this gift would be more valuable to me than anything else.
“Hey, Mom? You still know the best.”
What are your thoughts on this story?
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