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.
This Girl Was Traded to an Older Man for Money as a Child — Now She’s a Famous Actress who Managed to Reconcile with Her 3 Daughters
This future star had a difficult upbringing because of her mother, who traded her for a few hundred bucks and was a chronic drinker. She overcame everything, had a successful profession, and is now a mother of three daughters.
Some Historical Details Regarding the Actress
Demi Gene Guynes is her birth name, and she was born on November 11, 1962. After just two months of marriage, her mother Virginia King was abandoned by her birth father, Air Force Airman Charles Harmon Sr.
Her parents had split up by the time this future celebrity was born. Her mother remarried Dan Guynes, a newspaper advertising salesperson, when she was three months old. Their frequent employment changes caused them to have to move multiple times, as her stepfather did.
She had two eye surgeries at the age of twelve to treat severe strabismus. She also experienced kidney disease, and when she was thirteen, she learned the truth about her biological father. She moved in with her grandma while still a teenager, leaving her mother behind.
Before enrolling in acting school, Demi Moore joined with the Elite Modeling Agency and enrolled at Fairfax High School, which she left in her junior year. She married musician Freddy Moore in 1981, adopting his last name for the duration of her successful creative career, which coincided, fortunately, with her breakthrough year.
She started acting in 1981, first in “General Hospital” and then in the movie “Choices.” After that, she acted in films such “No Small Affair” and “Blame It on Rio” from 1984. She began to gain notoriety in 1985 after starring in “St. Elmo’s Fire.”
With “About Last Night,” Demi experienced a favorable career turning point the following year. Jerry Zucker’s 1990 romantic fantasy thriller “Ghost” is her most popular film, nevertheless. With performances in “A Few Good Men,” “Indecent Proposal,” and “Disclosure,” the actress rose to the A-list.
She rose to the top of Hollywood’s pay scale in 1995 because to her performance in “Striptease.” She had a successful career, but her marriage to Freddy was short-lived—it lasted barely five years.
She rose to the top of Hollywood’s pay scale in 1995 because to her performance in “Striptease.” She had a successful career, but her marriage to Freddy was short-lived—it lasted barely five years.
She wed Bruce Willis in 1987, and the two went on to become one of the most well-known pairs until their divorce in 2000. Tallulah Belle, Scout LaRue, and Rumer Glenn were the couple’s three offspring. In 2005, following her divorce from Bruce, she entered into her third marriage.
2013 saw the dissolution of the star’s marriage to Ashton Kutcher. Demi disclosed that she miscarried in the sixth month of her pregnancy, albeit she did not go on to have children with the younger actor.
On September 24, 2019, Demi released her candid autobiography. Her difficult upbringing, the challenges she overcame, and her resiliency were all detailed in the book “Inside Out.” One topic covered in her autobiography, which became an instant number-one New York Times bestseller, was her challenging upbringing.
The bond between Demi and her mother
The actress discussed her childhood in the book, revealing that her parents struggled with alcoholism and that she was reared in a home where there were arguments, infidelity, and frequent moves. Demi’s mother tried suicide when she was just 12 years old, and Demi had to save her from an overdose.
With her father holding her lips open, Demi had to remove the medications her mother had attempted to consume. That was only one of countless incidents like it. When she discovered her parents’ marriage license when she was thirteen, she came to the conclusion that Dan Guynes, the man she had known as her father, was not actually her biological father.
Her mother had lied to her when she had inquired if Dan was her father. Demi asked her Texas-based aunt when she was there, and eventually she invited her biological father to stay. Virginia never intended for her daughter to be aware of her biological father.
Demi realized that her mother had felt protective, but she also felt deceived by everyone but herself. Virginia took her out to clubs as a teenager, hoping that men would notice them. Her mother firing her at the age of fifteen was another extremely traumatic incident that permanently defined her adolescence. It is said that Virginia traded her to a friend who then sexually assaulted her.
The actress mentioned that the man disclosed the $500 he had provided her adolescent mother to be with her when she spoke with Diane Sawyer of “Good Morning America” about her memoir. She doesn’t think her mother sold her, despite the fact that it was a terrible experience.
She did, however, accuse her mother of placing her in danger and allowing a male to access her body. She was aware that Virginia was unable to keep her safe, though. Later on, Demi had children of her own and found it difficult to raise them well.
What Kind of Mother Did Demi Play?
Following the release of her book, Demi appeared on numerous TV shows where she discussed her difficult upbringing and bond with her mother. She recalled that she had taken up the role of caring for her mother following Dan and Virginia’s separation.
Because her mother was an alcoholic at the time, taking care of her was difficult. Demi’s stepfather, who was 37 at the time, killed himself two years after she and her mother split up. Only his suicide made Virginia’s alcoholism worse.
Demi severed her relationship with her mother in 1990 when she left a paid rehabilitation stay. But the actress made amends with Virginia prior to her 1998 cancer death.
Tallulah, the star’s daughter, also had a tense connection with her mother, similar to how the actress felt about her own mother. The difficult connection between Tallulah and Demi started after the actress was wed to Ashton.
The mother-daughter duo struggled to communicate with each other. Tallulah felt abandoned because the actress struggled with addiction and was reliant on Ashton.
Tallulah felt even more abandoned after Rumer and Scout moved out. She thought the actress had forgotten about her and had stopped loving her. Tallulah admitted that she hadn’t spoken to Demi in almost three years in a Mother’s Day 2020 Instagram post, and the occasion made it even more painful for her.
But Tallulah had “a metamorphosis of inward self-reflection,” and her capacity for forgiveness made their separation possible to end. Now that she and her well-known mother have made amends, Demi plays a vital role in her life.
She often pondered the kind of relationship she would have had with a 26-year-old Demi had they crossed paths back then. Tallulah assumed they would have laughed a lot, but she said that she now “revel[ed] in all that” her mother has taught and is teaching her.
“I see where you came from and what this day means for you.”
She affectionately ended her statement by praising her mother’s every flaw and saying that she loved the actress “eternally.” Demi had her kids look over the book’s draft and make suggestions, but none of them made any changes.
Scout expressed her pride in the actress for having at last done some introspection after spending so much time in survival mode. According to the star’s daughter, Demi’s memoir demonstrated how at ease and secure she is in her own skin.
Nonetheless, the book brought up some awkward memories for the three siblings, who have also battled with substance abuse and difficulties related to their bodies. Scout acknowledged that they were challenged by the book since their mother tried to share the most vulnerable aspects of her life, which also happened to be the most painful for their daughter.
The book provided Rumer with additional in-depth information about their mother’s past. She believed that while kids thought their parents were gods, as they got older, they realized they were simply regular humans.
Demi and her kids are closer than ever these days. Because of their intimacy, they were placed in quarantine together during the coronavirus outbreak. Bruce together with his spouse and kids were part of the family. They demonstrated their unity as a blended family in a statement from February 2023, when they supported Bruce in his battle against his 2022 aphasia diagnosis.
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