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 LOVE STORY OF MARLO THOMAS AND PHIL DONAHUE.
Phil Donahue and Marlo Thomas wrote a book about marriage. It’s called “What Makes a Marriage Last: 40 Celebrated Couples Share with Us the Secrets.” In the book, they talk about their own marriage and share secrets from other couples.
Even though Marlo has been married to Phil for more than 40 years, she admits that when she was younger, she didn’t really want to get married.
In the book, Marlo Thomas talks about how she used to think marriage was like a vacuum cleaner that sucks out all your energy and ambition. She felt like living with a jailer you had to please.
But everything changed when she met Phil Donahue. They found each other after Phil’s first marriage ended, and now they have a strong bond that has lasted their whole lives.
Phil Donahue became famous with his TV show, “The Phil Donahue Show,” which later became just “Donahue.” It ran for 29 years and was the first show to let the audience join in. Marlo Thomas was a guest on his show, and meeting her changed Phil’s life.
The couple first met in Chicago in 1977. Phil Donahue already had four boys with him, and his fifth child, a daughter, lived with his ex-wife and her mother in another place.
Marlo and Phil dated for three years before getting married in 1980 in a small ceremony with 35 people.
Marlo’s friends and family were surprised by her decision to get married, given her past views on marriage. The book tells a funny story about friends at Marlo’s bridal shower putting up quotes from her that showed her previous thoughts about marriage.
According to the book, Marlo’s mom was really surprised at their wedding and kept asking Phil, “How did you get her to do this?” Even strangers, like a woman on their honeymoon plane to Greece, were shocked and disappointed that Marlo, who was known for being independent, decided to settle down.
In the book, Marlo admits that this made her doubt her choice. She wondered if she was being hypocritical since she had criticized marriage for so long. She worried that she let down fans who saw her as a symbol of independence.
Despite the challenges, Phil and Marlo make their marriage work. They talk about the ups and downs in the book, saying that those tough times helped strengthen their bond.
In the early days of their marriage, they spent time apart because Phil was taping his show in Chicago, and Marlo was traveling for her acting career. Even though they weren’t always living together, Marlo’s aunt helped her see that marriage can mean different things to different people.
Despite the distance, Marlo and Phil made their marriage successful. And one important thing to note is that Marlo not only gained a husband but also gained children when she got married.
In a 2012 interview with AARP, Marlo Thomas talked about helping to raise Phil’s children. She knew they already had a traditional mother, so she didn’t try to take on that role. Instead, she became more like a friend to Phil’s children, just like her own mother was to her.
Marlo says that her relationship with Phil’s children is even stronger now than when she first married Phil. In the book, Phil emphasizes that Marlo spent a lot of time talking to and trying to understand his sons.
Phil and Marlo think that the key to their long marriage is the trust they have in each other. Marlo says, “You build trust when you realize that this person always has your back.”
Even though they’ve been married for over 40 years, they believe there are still more memories to create together.
Phil says that for a marriage to last, both people have to really want it. Marlo agrees and says that looking back, she wouldn’t have it any other way than being married to Phil. She points out that he has supported her in every possible way.
Marriage is a wonderful connection, especially when two people fully commit to it. This couple is truly inspiring and sets a great example for all of us. We should all aim for a relationship as successful as theirs!
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