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.
NHL Star Johnny Gaudreau, 31, and His Brother Tragically Die: Details
Reports have stated that Johnny Gaudreau and his brother recently passed away. Details divulging the tragic news have been shared online.
NHL star Johnny Gaudreau, 31, and his brother, Matthew Gaudreau, were tragically killed after the two were struck down by a passing car in Oldmans Township at approximately 8:30 p.m. on Thursday evening, August 29. According to authorities, the brothers were riding bikes on a rural road in New Jersey called Stumpy Lane when the accident occurred.
Johnny’s hockey team, the Columbus Blue Jackets, posted a statement about his demise on X earlier today, August 30. The lengthy message notes how devastated and shocked the team is by the sad news.
Boasting about how incredible of a player and person Johnny was, their statement divulged, “Johnny was not only a great hockey player, but more significantly a loving husband, father, son, brother and friend.”
They go on to highlight how joyful Johnny would be in every game he played—a joy that was felt by everybody else who got to see the late star play. Johnny always brought his A-game and passion for the sport everywhere he went.
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His hockey career took him from Boston College to the Calgary Flames to Team USA to the Blue Jackets, where he served as the team’s winger.
“The impact he had on our organization and our sport was profound, but pales in comparison to the indelible impression he made on everyone who knew him,” mentioned the Columbus Blue Jackets in their statement.
The grieving team went on to reiterate how much the superstar athlete is missed by them and their community and ended their message by asking the public to pray for the Gaudreau family, who are dealing with an unimaginable loss.
The Columbus Blue Jackets also asked that the bereaved family’s privacy be respected. In the same way that Johnny’s hockey team shared a statement about his passing, the Commissioner of the NHL, Gary Bettman, shared some words about the tragedy as well.
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He penned a lengthy message on the official Public Relations website page of the NHL that spotlighted the incredible legacy Johnny has left behind as one of the League’s “brightest young stars” during his impressive 11 seasons in the NHL.
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“We send our most [heartfelt] condolences to his wife Meredith; their children, Noa and Johnny; his parents, Guy and Jane; and sisters Kristen and Katie,” wrote Gary at the end of his statement.
The devastating news of Johnny and Matthew’s passing comes after numerous reports had first announced that the accident had taken place. However, at the time, the two victims had not been identified as Johnny and Matthew yet.
A report from 6abc Action News discussed the scenario and divulged that the New Jersey State Police disclosed that the person who had been driving the vehicle that struck Johnny and Matthew had stayed on the scene after the accident. Authorities also shared that they believed the driver to be under the influence.
X was also ablaze with announcements about the accident. A woman named Elaine Shircliff posted, “Spoke with the New Jersey State Police and was informed they are getting bombarded with phone calls and cannot release any information at this time.”
She added that they could not confirm or deny the rumors that it was indeed Johnny and his brother who were the two victims.
However, on the same day Elaine tweeted her message, another X user named Steve Franklin shared an update of his own. In Steve’s update, he said that his brother, who is a police officer in Salem County, New Jersey, confirmed to him that it was the late NHL star and his brother who died.
After this tweet, Tim Peel, a retired NHL referee, took to X to say, “Reports are that Johnny Gaudreau and his brother Matthew were killed by a drunk driver [tonight]. Please pray that this is not true!”
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