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.
No one shows up for 6-year-old’s birthday party – then mom shares picture and the community steps up
For one youngster named Teddy, it was supposed to be the finest day of his life, but instead it was a terrible experience. His parents wanted to take him to Lego Land or Disney World for his sixth birthday, but he preferred to celebrate with his pals.
About two weeks prior to the big day, Teddy’s mother reserved a table at Peter Piper Pizza and handed 32 invitations to Teddy’s teacher, asking her to give one to each student in the class. More over half of the parents of the children stated they would bring the kids to the celebration.
Teddy’s mother Sia ordered a large pizza and made gift bags for her son’s buddies for his birthday. Even though everyone was expecting to have a blast, not one of the classmates came up. After over an hour of waiting, the friends had vanished from sight.
Sia was devastated after this. She was inconsolable for her son, who was having a really difficult day on what should have been an enjoyable one.
The New York Post was informed by Teddy’s father, “I was bummed, I was bummed out for sure.”Teddy found it sad that they hadn’t arrived one hour into the celebration because, to him, that was the most important thing. The parents sought to divert their son’s attention with pastimes like arcade games in an effort to lift his spirits.
In an effort to raise awareness that something like this should never happen to anyone, Sia chose to snap a picture of Teddy and post it online. She didn’t anticipate, though, that Teddy’s dejected picture would become so popular and garner so much attention. When she saw how much publicity it garnered, she even regretted posting it.
Teddy received birthday wishes from hundreds of people, many of whom also sent gifts. The Phoenix Suns and the Phoenix Rising MLS team welcomed the family to their forthcoming games as part of their efforts to brighten Teddy’s day a little bit.
Only one parent apologized to Sia on behalf of all the other parents who didn’t bring their kids to the celebration.
Even if this narrative left us feeling let down, it should serve as a reminder to exercise greater consideration and thoughtfulness.
Watch the video below to learn more about the narrative.
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