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 Star Is Now Living Privately with Famous Spouse – He Proposed on 2nd Date & Still Loves Her at Any Weight
Delta Burke had once been in the center of the spotlight with project after project lining up for her, but after leaving “Designing Women,” her fame and work also started to fizzle out.
After having almost not-so-successful projects, the actress decided to stay out of the spotlight and live life like a regular citizen.
Despite her many changes, her husband of more than three decades declared he would still love her no matter what. Here’s a look into Delta Burke’s life.
Delta Burke came into the limelight when she won the Miss Florida title in 1974. She went on to the Miss America Pageant, won a talent scholarship, and studied at the London Academy of Music and Dramatic Arts.
Burke got into film in 1979 when she starred in “The Seekers” and “The Chisholms.” However, she is best known as Suzanne Sugarbaker in the 1986 series “Designing Women.”
She started a production company that produced “Delta” and “Women of the House,” and Burke starred in both projects. Later, she started her clothing design company called Delta Burke Design.
Burke took the role of Suzanne Sugarbaker in “Designing Women” for five out of the seven seasons the show ran for because the show’s producers fired her.
After firing her, she said the executive producers, Linda Bloodworth-Thomason and Harry Thomason, psychologically abused her.
However, the executive producers and the show’s stars said Burke made things difficult for everybody, so they fired her. Burke said,
“Basically, it became unbearable into the second season for me. By the end of the fourth season, I just couldn’t live like that anymore.”
Burke described the work environment as bizarre, and people didn’t believe her. She then went to ask for help from people who had power, and they didn’t help her.
Even though she missed her character after a few months, she said she had no regrets about being off the show. After over a year, she said she had gotten used to her weight but wanted to lose some pounds.
But after leaving “Designing Women,” she changed her looks and was reportedly looking heavier than before in the next series she starred in titled “Dayo.”
In 2012, while shooting her show “Counter Culture,” Burke fell. The fall led to the cancellation of the show. After that, Burke stayed out of the spotlight for some years.
Later, when she was spotted going out for lunch, she looked entirely different. In place of her signature bouffant hair was a brunette bob, and she ditched the vivid lipstick for a relatively makeup-free face.
The actress who suffered very public weight battles had also lost some weight. Besides weight problems, she had battled with depression, hoarding problems, and obsessive-compulsive disorder.
In 2008, she sought treatment at a psychiatric hospital, and even though she wasn’t looking forward to any work, she felt more than happy with life.
Burke, who is healthier and happier, was diagnosed with type 2 diabetes. However, she said her husband, Gerald McRaney, always reminds her what to eat and what not to eat.
Despite everything she and her husband have gone through, her husband will always love her no matter what. She said,
“Mac loves me no matter what. He loved me when I got as big as a house. He loved me when I was a blonde.”
She said her husband didn’t tell her he hated her blonde hair until she returned to brunette. He always loved her through any situation and still thinks her body looks great even though she feels it does not.
Burke and McRaney met in 1987 when she was a guest star on his detective show “Simon & Simon.” He knew he had competition, but McRaney was not ready to let her go.
McRaney asked her to marry him on their second date even though his friends were against it. They never wanted him to marry an actress, but McRaney knew only an actress would understand his work hours.
In 1989, they got married, and their marriage was McRaney’s third marriage but Burke’s first.
McRaney started acting in junior high school after injuring his knees during a football session. He was a guest star on “Gunsmoke: Hard Labor” before making his big break on “Simon & Simon” in 1981.
Burke and the “This Is Us” actor never had children together, but she became the proud stepmom to his kids from his previous marriages.
The couple worked together on different projects, and McRaney revealed that, unlike other couples, they do better when they are together 24/7.
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