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.
Heartbreaking Update on ”Dallas” actress Linda Grey-
Linda Gray, who pIayed the legendary role of Sue Ellen Ewing in the hit show Dallas, had a life filled with excitement and a number of obstacles.
Recalling her childhood in Culver City, CaIifornia, she says how being given the chance to hang out with her friends around the filming studios triggered something in her that made her fall in love with acting. Her father, whom she describes as a rather cold person was always supportive of her career. Her mother used to be a heavy alcoholic while Linda and her sister were growing up so they had to take care of the house for long.
“She wasn’t falling down drunk, there was never any yeIIing,” Linda wrote in her book The Path to Happiness is Always Under Construction. “She wasn’t mean – she was just blurred, in her own world, she would forget to buy food so I started doing the cooking. My sister and I didn’t like her.”
Linda married her first and only husband, whom she separated with in 1983, photographer Edward Lee Thrasher, when she was 21. They had two children together, and although she enjoyed being a mother, it was her husband who somehow stood in her way of making a career in acting.
Although she was part of many commercials, it took Linda quite some time to finally gather the courage to attend acting classes.
In 1967, Linda was paid $25 to be Anne Bancroft’s body double in the poster for the film The Graduate not knowing that years later, or in 2001 to be exact, she would end up playing Mrs Robinson in the West End State production of The Graduate.
During the 1960s, she got a rejection letter from the Glamour Magazine, but that only made her more determined to succeed. “It was so funny that I kept that letter,” she wrote. “I kept the letter because I realized that we all have rejections, and it was her opinion when I was 20 years old. I could have had it devastate my life. But, I didn’t. This feisty streak came out – ‘Oh, yeah? I’m gonna show you!’ With great love and a lot of humor, I kept that letter. It kicked me from behind, and made me want to go and do something.”
After playing small roles, Linda finaIIy got the one that marked her career, that of Sue Ellen Ewing. She appeared in total of 308 episodes on Dallas and played alongside Larry Hagman and Patrick Duffy.
Speaking of her relationship with Hagman, Linda told CM Chat Live: “He was the bad big brother that I never had. He was always doing something in my mind wrong – he was drinking too much, or whatever, and I would reprimand him, he loved that, he loved to do something just to make me crazy. I’d say ‘Don’t eat that. You don’t need that much sugar, and stop drinking.’”
In fact, when Linda was briefly fired from the show for asking for a higher pay, it was Hagman who demanded she gets back.
For her legendary performance in Dallas, Linda received numerous awards, including two Golden Globe Awards for Best Actress – TeIevision Series Drama, as well as a Primetime Emmy Award for Outstanding Lead Actress.
Her son, Jeff Thrasher, followed into her footsteps and worked as a director. Sadly, he was diagnosed with leukemia and passed away in 2020. Linda was devastated. She had a hard time coping with the loss. Recently, she paid tribute to Jeff writing: “A celebration of my son Jeff’s life. He was the kindest, funniest, sweetest human being….. he brought the world such love and was loved by everyone! May his journey be a magicaI one.”https://www.instagram.com/p/CICmEWyrPUt/embed/captioned/?cr=1&v=14&wp=675&rd=https%3A%2F%2Fbengalimedia24.com&rp=%2Fheartbreaking-update-on-dallas-actress-linda-grey%2F%3Ffbclid%3DIwAR2dgWz6EFpC6RtaLAWwCBgR-BcaAhAdm0FRg147EhNfvC0WfZ9fCh18Swk#%7B%22ci%22%3A0%2C%22os%22%3A1751%2C%22ls%22%3A1148.4000000059605%2C%22le%22%3A1748.4000000059605%7D
We are very sorry for her loss. Linda is doing her best to live her life without her son. She is 82 years old and is looking as stunningly beautiful as always
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