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.
Georg Stanford Brown and Tyne Daly’s interracial marriage stood the test of time despite the prejudices they faced…
Hollywood actors Georg Stanford Brown and Tyne Daly only dated for five months before deciding they wanted to be together forever.
Their love affair began in the 1960s when interracial marriage was considered taboo, illegal, and punishable by law.
They married on June 1, 1966, just one year before interracial marriage became legal across the U.S. As late as 1960 such marriages were illegal in 31 states in the U.S.
Georg Stanford Brown had moved from Havana to Harlem when he was 7 years old and then moved to LA 10 years later where he finished his education, majoring in theater arts.
Although, initially choosing the path of theater arts to ‘do something easy’ he ended up enjoying it and returned to New York to attend the American Musical and Dramatic Academy, working as a school janitor to pay his tuition, earning $80 a week.
It was there that he met his future wife Tyne Daly where they both studied under Philip Burton, Richard Burton’s mentor.
Brown is perhaps best known for his role as Officer Terry Webster, one of the stars of the ABC television series “The Rookies” that aired from 1972 to 1976.
He was also well known for his character Tom Harvey in the mini-series “Roots.”
During his long career as an actor and director, Brown played a variety of film roles, including Henri Philipot in The Comedians and Dr. Willard in Bullitt. In 1984 he starred in The Jesse Owens Story as Lew Gilbert.
When Brown married American singer and actress Tyne Daly she was a household name for her iconic role-playing Mary Beth Lacey, the gun-toting working-mother cop in the hit show “Cagney and Lacey.”
When the couple got married they faced racial prejudice but chose to ignore it – until they appeared on an episode of “The Rookies” together and shared their first on-screen interracial kiss.
Network censors wanted the scene deleted, but the couple stood their grounds, taped, and aired the segment without any issues from those closest to them.
In an interview with the Washington Post in 1985, Daly said she never saw being married to Brown as interracial. She does not, she says, “like pigeonholes.”
She is married to “another member of the human race. I gave up categories a long time ago,” she added.
The couple has three daughters Alisabeth Brown, born December 12, 1967; Kathryne Dora Brown, born February 10, 1971; and Alyxandra Beatris Brown, born October 1, 1985.
Daly said when their daughter Alyxandra was born, “on her birth certificate, under ‘race,’ we put ‘human’; under ‘sex’ we put ‘yes’, and under ethnic origin, we put ‘citizen of the world.’”
Describing her marriage to Brown, Daly said: “I have a good and interesting marriage that has gone on for quite some time and he’s an interesting fellow and we have some fascinating young children . . .”
Brown went into directing, and in 1986, he won a Primetime Emmy Award for Best Director in a Drama Series for the final episode of “Cagney & Lacey.”
Daly went on to star in many Broadway shows playing the role of Madame Arkadina in “The Seagull” in 1992, Cynthia Nixon in the 2006 comedy “Rabbit Hole,” and Maria Callas in “Master Class” in 2011, among others.
In 1990, after 24 years of marriage, Brown, and Daly filed for divorce. Even though their marriage had stood the test of time, they had to go their separate ways due to irreconcilable differences.
Despite divorcing after more than two decades this couple’s love and their fight to ignore the prejudice they faced is an inspiration.
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