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.
The Heartwrenching Life of Mary Tyler Moore
Mary Tyler Moore spent decades as “America’s Sweetheart,” starring in popular shows like The Dick Van Dyke Show and The Mary Tyler Moore Show. But behind her Hollywood success, her life was filled with family tragedies. Here is the story of Mary Tyler Moore.
Mary Tyler Moore was born on December 29, 1936, in Brooklyn, New York, to George Tyler Moore, a clerk, and Marjorie Hackett Moore. She was the oldest of three children in a Catholic family, raised in a home her father called “impoverished nobility.”
Mary Tyler Moore – Childhood
Brooklyn was a diverse place during Mary’s childhood. As an English-Irish Catholic, she grew up in an orthodox Jewish neighborhood. Though it was different from what she was used to, Mary found it exciting. “My background is exciting,” she said. “We integrated ourselves, fought each other, called each other names, but through it all we were friends.”
Mary loved dancing as a young girl. When she was five, her family moved to Los Angeles, bringing her closer to her dream of being in show business. After World War II, the Moore family settled in Los Angeles, where Mary’s successful uncle, Harold Hackett, encouraged the move.
Moving to Los Angeles
Starting at the bottom, Mary worked hard to achieve her dream. She attended grammar school in Hollywood and later went to a Catholic school. She wasn’t the best student and struggled with self-confidence, especially with a father who was an expert on movie classics.
However, Mary knew that if she was going to make it in show business, LA was the place to be. She focused on singing and dancing and worked in the mailroom of a Hollywood company in 1953. Although it wasn’t glamorous, it was a step toward her dream. But Mary wasn’t meant to stay in a mailroom.
Mary would often sit in on radio show rehearsals, and she eventually took dance classes, which her aunt paid for. By the time she graduated high school, Mary was well on her way to a career in show business.
Mary Tyler Moore – Dancer
In 1955, Mary got her first on-screen role as a dancer in TV commercials for The Adventures of Ozzie and Harriet. She played “Happy Hotpoint” in 39 segments, earning $6,000. At just 17 years old, Mary was now a professional dancer. But soon, she found out she was pregnant, which changed everything.
Mary had married Richard Carleton Meeker in 1955, and they had a son, Richard “Richie” Meeker Jr., in 1956. She wrote in her memoir how difficult it was to continue working as an actress while pregnant. She even had to squeeze into a costume that became tighter as her pregnancy progressed.
Mary Tyler Moore – Comedy Shows
After her pregnancy, Mary’s career took off. She appeared in several TV shows, and although she was often hired for her “beautiful dancer legs,” she soon proved she had real talent. In the early 1960s, she was cast as Laura Petrie on The Dick Van Dyke Show. The show became a huge success, known for its clever humor. Mary won two Emmys and a Golden Globe for her work on the show.
After the show ended in 1966, Mary took a break to focus on family and movies. However, she found her true calling in comedy shows. In 1970, she got her own show, The Mary Tyler Moore Show, where she played the role of Mary Richards, a single woman working as a producer at a fictional news station. The show was groundbreaking and became an instant hit.
Mary’s show ran for seven seasons and 168 episodes, earning her many awards. But it wasn’t all easy. Before the pilot aired, both Mary and the writers were worried. They had a terrible first run-through, and Mary cried herself to sleep. But the writers made changes, and the show became a huge success.
Mary Tyler Moore – Awards
The show was filmed in front of a live audience, which made it nerve-wracking for Mary, who often had to perform dance routines perfectly. “It was do or die,” she said. Mary won several awards for her role, including three Emmys and a Golden Globe, proving her talent.
However, behind the success, Mary faced personal struggles. Both she and her mother battled alcoholism. Mary’s sister passed away from a combination of alcohol and painkillers, and Mary’s own son also faced addiction and tragic loss.
Alcohol Abuse
Mary’s alcoholism worsened during her marriage to Grant Tinker. She would drink to cope with unhappiness, even playing “Russian roulette” with her car. After their divorce in 1980, Mary’s drinking continued until she checked into the Betty Ford Center for help. She managed to stop drinking and found strength during her recovery.
Tragic Passing of Son Ritchie Meeker
Mary’s son, Richie Meeker, tragically passed away in October 1980 after accidentally shooting himself with a gun. Richie had struggled with addiction, and his death was devastating for Mary. She later spread his ashes in the Owens River in California and wrote about her grief in her memoir.
Mary Tyler Moore – Academy Award
Despite the heartbreak, Mary continued to find success. In 1980, she starred in Ordinary People, earning an Oscar nomination for Best Actress. She also won a Tony Award for her Broadway performance in Whose Life Is It Anyway?.
Mary married Robert Levine in 1983, and they stayed together until her death in 2017. In her later years, Mary battled complications from diabetes, including heart and kidney problems. She also lost her vision, and in 2011, she had a benign tumor removed from her brain.
Mary Tyler Moore passed away on January 25, 2017, at the age of 80 due to cardiopulmonary arrest, following a battle with pneumonia. Her death was met with tributes from fellow celebrities, including Robert Redford and Oprah Winfrey.
Mary Tyler Moore had a tough life behind the scenes, but she will always be remembered for her talent, grace, and kindness. She will be missed, but her legacy lives on.
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