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.
Poor Mom Lives in Old Trailer with Son and Never Lets Anyone in until She Gets Hospitalized
Before she passes out and is taken to the hospital, an impoverished woman never lets anyone inside her run-down trailer. Her life is ultimately altered irrevocably by the subsequent events.
“Hey, young one! Keep away from him! Barbara let out a scream and hurried to where her son Timothy was playing with a child called Harry. “You have no right to come play with my son here. He doesn’t associate with weirdos and recluses!
“Mum!” Timothy started to cry. “That’s not Harry at all! I invited him to play with me and the other kids from the neighborhood because we are friends.
“Stop talking, Tim! You’re not aware of the potential risk that some people pose. You are aware that his mother is a deranged person who never allows anyone to be around her or enter her ridiculous trailer? How often have I told you not to go visit him already?
“Please, mom! It’s a nice boy, Harry. Simply said, we Harry cut Timothy off just as he was getting started.
“Don’t worry, Tim. He turned to face Barbara and said, “My mom says that mothers are always right, but Mrs. Anderson.” “My mother is a sweetheart. She is so afraid that she won’t let anyone into our trailer.
“Afraid?” Barbara gave him a sardonic chuckle. “We ought to be terrified of her! She must be planning something shady! Anyway, remember this, child: you will never again play with my son! Did you get the message?
Harry became so overcome with emotion that he was unable to talk. He ran out of the park to where he always parked his old white trailer, beneath a parched tree that marked the edge of a woodland that connected two suburbs.
Tracy, his mother, became concerned when she noticed he was sobbing all the time. “Honey, what’s the issue? What’s causing your tears? Are you in pain?
Harry sobbed, “It was one of our neighbors again, mom.” “Mom, they call you names all the time. I detest that! I detest all of them!
Tracy gave him a hug and whispered, “Oh, honey.” “Never harbor hatred for someone. People tend to say hurtful things when they’re upset. It implies neither that they despise you nor…
“No, mother! You’re not getting it! Harry shot back. They have no interest in comprehending you, myself, or anybody else. Are you even aware of the events of today? Mrs. Anderson advised me not to play with Timothy because I’m a hermit’s son and called you a recluse. Mom, please let’s get out of this town. I wish to leave this place.
Tracy was at a loss for words at that time. She was unable to inform Harry that her supervisor had sacked her that very afternoon and that her savings were running low. There was a moment before she said, “Honey.” “Maybe we should put off making a decision until the following month?”
“But why, mother? Why should we put up with their taunts? The boy became irrational. “Aww…all right, just do what you want! He moaned, “I want to spend some time alone,” and turned to leave.
Tracy started crying as soon as Harry departed. She berated herself for being an awful mother and a failure in life who had let her son down in addition to herself. She got up slowly and went to her bed, where she sobbed while holding a picture of Harry. Before long, she was fast asleep and unable to think of anything.
Harry returned to the trailer after nearly an hour had passed. “On my way back, Mom, I picked up some bread.” Would you kindly prepare the french toast for tomorrow morning? As he walked in and shut the door, he said.
Tracy was sleeping on the bed when he discovered something strange about the way she was lying there. “Mum? After asking, “Did you have dinner?” and giving her a little shake, Tracy ended up on the ground. “Mum! What took place? Let your eyes open! As the youngster realized his mother was not breathing, he began to cry.
He swiftly looked for Tracy’s phone and made a 911 call. Tracy was hauled away by the ambulance after a short while, which seemed like an eternity to the little kid. Harry sobbed while sitting outside the trailer, covering his face with his hands.
A voice suddenly cut him off. “Boy, what are you doing here by yourself? What happened to your mother?
Harry observed an older woman standing in front of him when he looked up. She smiled and said, “Don’t worry, I often see you and your mother here before I leave for work, so I know you two.” “Is everything in order?”
Harry felt a tiny bit of relief. “Mom fainted and was taken to the hospital.” I’m concerned for her.
The woman let out a gasp. “Don’t worry, she will be alright. Did they let you know which hospital they brought her to?
Yes, they provided me with a number and address. They wouldn’t let me accompany her because I’m a minor.
What if you spent the evening at my house? Tomorrow morning, we can visit her.
“However,” Harry faltered. “Why do you assist me? Our neighbors don’t think well of us. Do you not also believe that we are?
The woman started giggling. Harry, try not to let stuff like this affect you. In some manner, everyone is cruel.
“How did you know my name, wow?” Never before have we…
“Well, when I get home late from work, I see that you’re playing around here a lot.” You refuse to go back and sleep despite your mother’s persistent pleas.
“Oh!” With a smirk, Harry embarrassedly rubbed the back of his head. “I apologize; I didn’t adequately introduce myself. Harry Stevens is who I am.
“Hello Harry, nice to meet you. You may address me as Mrs. Taylor. So, are you interested in coming to supper with me tonight?
The boy said, “Sure,” and went with Mrs. Taylor to her house. The boy stayed at her residence that night after they had dinner together. Tracy had fainted from stress and tiredness, they found out when they went to see her the next day. Mrs. Taylor took over to take after Harry while she was in the hospital, as the doctors predicted she would be there for some time.
“Ma’am, you have my sincere gratitude,” Tracy remarked to Mrs. Taylor. “I’m very happy Harry is doing well. She turned to Harry and said, “Honey, would you please wait outside while I speak with Mrs. Taylor?” “I have important things to talk about.”
Yes, mother.
Tracy burst into tears as Harry left. “We appreciate your assistance, ma’am. We are truly unable to repay your kindness.
“I’ve seen you by yourself quite a bit. How come you don’t interact with your neighbors? Although they can be bothersome occasionally, they aren’t too bad.
“Mrs. Taylor, I don’t blame them for treating me badly. I kept quiet about my living situation since I felt ashamed of it. Being an orphan, I was sure I could care for my son after my spouse passed away, but things didn’t work out. We had to get out of our big mansion and drive a little car. I used to be a waitress in a restaurant to help support my son while I was a struggling writer, but I got fired yesterday for being consistently late to work. I’m just a failure, nothing more. Kindly accept Harry. I am unable to care for him. Would you please…I simply want to stop living!” She sobbed uncontrollably.
“You ought not to say that! In all time! For now, concentrate on recovering quickly! Young lady, you never know where life will lead you!
Mrs. Taylor was correct, of course, when she emphasized that anything can happen in life at any time.
Sitting at a table, Tracy autographed copies of “The Woman: Life Through the Odds,” her debut book, which was already a New York Times bestseller. There was a sizable group waiting for her to sign the copies, and she was resplendent in a suit.
This day, exactly a year ago, she had come home from the hospital. Mrs. Taylor started a GoFundMe page to gather money to help her and Harry when she saw how horrible the conditions were inside her mobile home.
That gave Tracy the willpower to start over after she had earlier wanted to give up on everything and consider herself a failure. She began working as a waitress on the weekends and as a freelance writer during the week after renting a tiny home. She would write her book all night long, and nine months later, it was eventually published. Harry was able to attend a better school thanks to her, and Mrs. Taylor—who had previously been unknown to them—became both her mother and Harry’s grandmother.
As Tracy was about to leave her book signing, she thought back on how her life had altered. She pulled out to find a black automobile waiting for her. Anderson Brown, her fiancé, got out of the car and held the door open for her.
It was at Harry’s school that Tracy had first encountered him. She fell in love with him right away; he was a widower with a daughter. He asked her to marry him shortly after, and she accepted.
After Tracy took a seat in the front seat, they drove home to their daughter and son and their new roommate, Mrs. Taylor. On her walk home, she said a little prayer to God, giving thanks for everything.
What lessons may we draw from this tale?
We must exercise patience and seek out the bright side. When things get tough, we start to lose hope, just like Tracy. However, we must never lose sight of the truth that, with enough confidence, we can conquer any challenge. With Mrs. Taylor’s help, Tracy made a fresh start and is today a well-known author.
A book shouldn’t be judged by its cover. Because she was ashamed of her living situation, Tracey never opened her door to others, but they misinterpreted her and called her all kinds of nasty names.
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