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.
I’m Not Giving Money to My Late Husband’s Affair Child
The weight of betrayal, combined with the complexities of inheritance and responsibility, can be almost unbearable. This is the case for a woman who, after the loss of her husband, finds herself confronting a painful and unexpected dilemma.
She explained what happened.
My husband passed away nearly three years ago, leaving me to raise our 8-year-old child on my own. Since his death, I’ve uncovered truths about him that would have ended our marriage had he been alive.
About six weeks ago, a process server came looking for him with a court order to submit DNA for a paternity test. I handed him a copy of the death certificate and sent him on his way.
Not long after, a woman appeared at my door with a child, claiming this was my late husband’s son. Is it? I don’t know, and honestly, I don’t care. The child resembles him, but he’s young enough that he must have been conceived just before my husband’s death.
I informed her that he had passed away and directed her to his grave. Almost immediately, she began demanding ’her half’ of his estate. I couldn’t help but laugh and tell her that half of nothing was nothing, and she was welcome to it.
Where I might be seen as the bad guy is that, while there was no estate, there were assets that bypassed probate. One of those was a rental property given to us by his parents, deeded to us as joint tenants with rights of survivorship. When he died, it became mine.
I’ve since sold the property, and that money will go toward our child’s college education. Legally, I’m covered—I’ve already consulted my attorney. While I do feel sympathy for this child, my priority is my own.
People stood on her side.
- “You were not a jerk. And for what it’s worth, that’s not a terribly uncommon scam for some reason. If you still have the papers, I’d look into if they were even legitimate.” O***Vegetable / Reddit
- “I would have said, ‘He died with a ton of debt. Let me get your info, so I can transfer half of it to you.’ She would be out of there so fast!” New_Standard_8609 / Reddit
- “You need to focus on your child and your finances. The property legally belongs to you, and there’s no proof your late husband was the father of the other child. Your priority is your own child’s future.” Trick-Measurement-20 / Reddit
- “Unless she has a way to prove paternity, you have ZERO obligations to her or her affair baby. Even if he is, the rental property was in your name, so it was not your husband’s to give away. Remember, she chose to wreck your house. I would not open the door for her.” mi_nombre_es_ricardo / Reddit
- “Don’t even give a second of thought about this again. Just tell yourself, ‘It was just a scam.’ And never talk to that person again, get a restraining order if it comes to it. Having said that, if you ever are served with papers (i.e. an actual lawsuit has been filed) then lawyer up immediately and vigorously defend yourself.” Apprehensive-Care20z / Reddit
- “It’s between your late hubby and his baby momma. You received sole possession of all assets upon his death, and you owe nothing to the baby momma. She should have informed him she was pregnant with his child while he was alive if she knew. Why did she wait 3 years to come forward?” Funny247365 / Reddit
Though the moral and ethical aspects of her decision may provoke debate, it highlights a universal truth: moving forward often requires making tough, deeply personal choices.
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