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.
Huge News : MTG Is Trying To Finish Fani Willis
After former Trump Campaign officiaI Michael Roman alleged that Fulton County District Attorney acted in an incorrect way when she appointed Nathan Wade to be one of the special prose cutors in the case against Donald Trump and more than a dozen of his 2020 campaign officiaIs and lawyers, Rep. MTG demanded that Georgia Governor Brian Kemp take action against Willis. Gov. Kemp just refused to do so.
As background, MTG demanded action in a letter to Governor Kemp in which she, after summarizing what Willis allegedly did, explained what Georgia Code provisions she might have vioIated, saying, “And now we are learning she has allegedly enriched her secret boyfriend and herself during this process.
If proven true, these actions reflect Fani Willis’ serious lawlessness, including potential vioIation of public oath (Ga. Code Ann., § 16-10-1), bribery (Ga. Code Ann., § 16-10-2), improper influence of a government official (Ga. Code Ann., § 16-10-5), criminal conspiracy (Ga. Code Ann., § 16-4-8), conspiracy to defraud government (Ga. Code Ann., § 16-10-21), racketeering (Ga. Code Ann., §§ 16-14-1 through 12), false statements and concealment (Ga. Code Ann., § 16-10-20), Fulton County’s gift ban (Fulton County Code of Laws § 2-69(a)), and similar Georgia public-corruption cri mes.
Georgia statute states “the district attorney shall take the following oath: ‘I do swear that I will faithfully and impartially and without fear, favor, or affection discharge my duties as district attorney and will take only my lawful compensation. So help me God.’
If Fani Willis took kickbacks—in the form of lavish trips—from her unqualified boyfriend she appointed with government funds, she vioIated her oath and many Georgia criminaI statutes.”
Concluding, she then demanded a crimina investigation into DA Willis, saying, Thus, I request you order the immediate and formal criminaI investigation into the alleged criminaI misconduct by Fulton County District Attorney Fani Willis, along with her special Trump prosecutor and alleged boyfriend Nathan Wade, pursuant to your authority under Georgia statute.
Later, the Georgia congresswoman said that she has high expectations for Governor Kemp and AG Christ Carr to initiate an investigation into Willis. “I really have high expectations of Governor Kemp and our Attorney General Chris Carr,” Greene said. “There should be a crimina investigation.” She also added, “If he [Kemp] ignores this, then he’s showing an extreme political bias.”
Gov. Kemp has refused to do so. A spokesperson for him, explaining why in a statement to Breitbart News, said, The Congresswoman has every right to refer her complaint to the oversight commission once the legislative process concludes this session and the commission begins full operations.
That spokesperson added, “Just last year, the Georgia General Assembly laid out a specific oversight process for district attorneys that is transparent and unbiased, which the governor supported and signed into law.”
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