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.
School Bus Driver Drops Boy in Wrong Town, He Calls Mom Saying ‘I’m in a Dark, Dirty Room’ – Story of the Day
When my husband and I couldn’t pick up our son from school one day due to work, we asked Kyle to take the school bus home along with the rest of his classmates. However, things took a sharp turn when the bus driver made a mistake while calling out the bus stop locations.It was just an ordinary Thursday, or so I thought when I waved goodbye to Kyle as he left for school with my husband, Tristan. He wasn’t used to taking the bus since either Tristan or I usually picked him up from school. But work had us both tied up that day, so we called his teacher and told her he’d be taking the bus and that we’d pick him up from the bus stop as it was closer for us. She guided him on what he needed to do before boarding. “Alright, sweetheart, the bus driver is going to call out the names of the bus stops. You have to be alert and wait for him to call your stop. Okay?” Mrs. Patterson told him before Kyle boarded the bus…My baby was confident he could make it, as he had always seen himself as an independent child.”Thank you, Mrs. Patterson. I’ll be alert and wait for him to call out Pflugerville,” he said, hugging his teacher before boarding the bus. Then, he got to his seat, and the bus driver closed the door. Kyle knew that our house was a bit further than the rest of the kids, so he read a book while on the bus.
Although he knew the name of our neighborhood, he didn’t exactly know how the bus stop looked, as he’d never ridden the school bus before. After a couple of stops, the bus driver suddenly called out, “Pflugerville.” Looking around, Kyle realized he was the only one getting off at that stop. He thanked the bus driver, exited the bus, and found himself alone at the bus stop.”Dad? Mom?” he then called out. He didn’t have a cell phone, so he decided to sit, thinking we were just late. It was getting darker, and it was cold. Kyle started feeling scared and walked around the neighborhood, hoping to find our house. But he ended up lost. Then, while he was walking around, a dark figure suddenly appeared in front of him. Kyle started crying,afraid that he was about to be taken somewhere scary. To be honest, that day was hectic like no other. We didn’t realize how soon it was time to pick up Kyle. Tristan and I headed to the bus stop in the next town, expecting to see Kyle hop off with his usual bright smile. But as the kids disembarked one by one, the sinking realization hit us — Kyle wasn’t there. Panic set in when the bus driver approached us, his face pale. “I’m sorry, I made a mistake. I called out ‘Pflugerville’ too early. I drove back and looked for him, but…” he stammered. The anger and fear I felt were indescribable.
We promised to take action against this negligence, but our immediate concern was finding our son.As darkness enveloped the town, Tristan and I frantically searched the neighborhood, calling out Kyle’s name, hoping to find him. But we got no response. Our boy was somewhere, and we didn’t know where. Tears streamed down my face, the worst scenarios playing out in my mind. Then, my phone rang, cutting through the night’s stillness. “Mom?” Kyle’s voice, a mix of relief and fear, was the sweetest sound I’d ever heard. “Sweetheart, where are you? Dad and I have been looking for you,” I said, trying to keep my voice steady. He was calling from an unknown number. Whose number was that? “I’m with Frank. I’m in a dark, dirty room, but…”
The line went dead. My heart stopped for a moment. Had someone taken him? Who was this Frank? Without hesitation, we involved the police, who traced the call to a rundown part of town. We arrived at a decrepit shelter, where we found Kyle, safe but scared, with a beggar — Frank.Tristan and I were scared beyond words. Frank looked scary with his shabby appearance, and we thought he’d abducted our son. We were ready to unleash our fury at him for what we thought was a sinister act. Tristan almost raised his hand at the poor man. But Kyle’s voice stopped us in time. “Dad, Mom, why are you getting mad at him? You should be thanking him! If it weren’t for Frank, I’d be outside, freezing in the cold, or worse, someone could have taken me.” The realization hit us hard. Frank, this stranger who had nothing, had taken our son under his wing, offering him warmth and protection when he was most vulnerable. My heart swelled with gratitude and shame for my initial suspicions. Tristan and I immediately apologized to the kind man. Frank brushed off our worries and told us it was fine. “And that’s not all, Mom,” Kyle continued. “Using the money he had left, he bought me a sandwich instead of buying something for himself. He even gave me his blanket.”Tears welled up in my eyes, not just for the fear of nearly losing Kyle but for the kindness Frank showed him. That night, my husband and I treated Frank to a delicious meal at a local Chinese restaurant. Frank was overjoyed. “Thank you for this delicious meal. You really didn’t have to do anything for me. I was glad to help Kyle!” he smiled. “Something could have happened to our son if you were not there to save him, Frank. This is the least we can do,” Tristan said while pouring Frank another cup of tea. Tristan and I were so grateful for what Frank had done that we didn’t want to stop at just treating him to dinner. We wanted to make sure that although Frank was currently unemployed, he’d live comfortably.As Tristan worked for a large pharmaceutical company, he pulled some strings to get Frank a job at one of their pharmacy branches. We also made sure he had warm clothes and food while he adjusted to life as an employee. We wanted to ensure Frank’s future was as bright as the hope he’d given us. Ultimately, Frank’s life changed for the better, and he was able to move out of the shelter and rent a small apartment that was good enough for him to comfortably live in. He also excelled at his job as a security guard, and he enjoyed being able to work and interact with different people. Frank never thought that a simple act of kindness would change his life for the better. He had a stable job and a comfortable home and gained a good set of friends — all because he decided to help Kyle that day. Looking back, I realize how a moment of fear led to an unexpected friendship and a reminder of the inherent goodness in people. Frank, once a stranger, now holds a special place in our hearts.
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