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.
Son Sees His Old Mother’s Will and Orders Her to Pack Her Stuff Immediately — Story of the Day
A son discovers his mother’s will and what he reads in it makes him tell her to pack her bags immediately and get ready to leave his house.
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Gerald Nizbit stared at the text on his screen in astonishment, then he picked up the phone. “Helen,” he said crisply to his assistant. “Get me my lawyer on the phone, then Margaret Pratt, then my mother — in that order!”
Helen had been Gerald’s personal assistant for ten years, and she knew he wasn’t a particularly patient man, so she immediately started calling his attorney. In his office, Gerald was staring at the screen and shaking his head in disbelief. Oh, he was going to pay her back for this!
For illustration purposes only. | Source: Unsplash
Finally, Helen managed to get hold of the lawyer and put him through. “Sam,” said Gerald crisply. “Old boy, I just wanted to advise you that you committed a faux pas! You sent me my mother’s will for approval instead of sending it to her.”
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On the other side of the line, the lawyer blustered his apologies and embarrassment, but Gerald had said what he wanted to say so he quickly dismissed him and hung up. He sat staring out of his huge floor-to-ceiling window at the snowy New York skyline until the phone rang again.
This time it was Margaret Pratt. Gerald outlined his requirements succinctly, and told her, “I want it for today, Miss Pratt.” He listened to her objecting on the other side of the line then interjected.
“If you can’t get it sorted, I’ll go to someone who can.” The response on the other side of the line made him smile grimly. “This afternoon then, at 17:00,” he said and hung up.
He picked up the internal phone. “Helen, you can get me my mother now,” he said.
Within seconds, the ever-efficient Helen was patching through Mrs. Edith Nezbit. “Mother!” Gerald said. “Have two things to tell you. First of all Sam Kelson sent me your new will by mistake…and I want you to pack your bags immediately.”
Sitting in the lounge of Gerald’s gorgeous house where she lived with him Edith was speechless. “Gerald…Are you upset about the will? Please let me explain…”
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For illustration purposes only. | Source: Unsplash
True value is what is attributed by the heart.
“I don’t need your explanations, Mother, I need you to have your bags packed and be ready to leave by 16:00,” Gerald said, and hung up. Edith sat there with her heart pounding. She’d thought Gerald would understand!
He was the youngest of her three children, and the one who’d always stood by her, helped her through the difficulties of life, and when Edith’s arthritis threatened to cripple her this last year, even though she was only 62, had taken her home to live with him.
Edith went upstairs to her room and packed her bags. Yes, she’d left all her money to her two older children, but she honestly thought Gerald would understand. Edith stared at her suitcase with tears blurring her vision.
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She had hurt her most beloved and kindest child! She had to explain! Edith called Gerald’s housekeeper to help her with her suitcase and went downstairs to wait anxiously for Gerald.
At 16:00 there he was, punctual as ever. He walked in, gave her a brief peck on the cheek and Edith cried, “Please Gerald. let me explain!”
For illustration purposes only. | Source: Unsplash
“I don’t have time for explanations, Mother. Come,” he said. “Everything is arranged.” He picked up Edith’s bag and carried it out to his car and put it in his trunk. Edith got into the car without a word.
Gerald drove without saying a word. “Where are we going, Gerald?” Edith asked, but Gerald chose that exact moment to turn on the radio and didn’t answer her. Edith looked around. She’d never been to this part of the city before…
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“Listen, Gerald, about the will…” Edith said bravely.
“Oh, the will!” said Gerald, glancing over at his mother and frowning. “The will in which you leave your house and $120,000 in savings to be divided between Amy and Oliver, and I get the old cabin by the lake and grandfather’s photos from the war, and dad’s watch?”
For illustration purposes only. | Source: Unsplash
“Yes…” whispered Edith. “You see…” But right then Gerald stopped the car. They had arrived at what appeared to be a small private airport, and a sleek private jet was waiting.
Gerald turned to Edith, and there were tears in his eyes. “Oh, mom, I understand about the house and the money. Amy and Oliver are struggling and I have more money than I could ever spend.
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“But what you are leaving me, mom, shows me how well you understand me. You know exactly what is important to me and close to my heart. I have all the money I need but the memories you are giving me are precious!”
“But Gerald…” gasped Edith. “I thought you were kicking me out!”
For illustration purposes only. | Source: Unsplash
Gerald grinned. “No such luck! I’m taking you to Tahiti for two weeks. I think it would do your arthritis the world of good, and I could use some quality time with my mom!”
Edith embraced her youngest — and secretly her favorite son, with tears in her eyes. He’d understood! Edith knew that her father and her husband’s keepsakes would be cherished and passed on lovingly by Gerald.
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The two spent a lovely time in Tahiti, and Gerald got himself a tan and even met a lovely girl who was also on vacation and came from New York and it looked to Edith like maybe she wouldn’t have to wait too long for those grandchildren after all!
For illustration purposes only. | Source: Pexels
What can we learn from this story?
- Don’t judge people’s intentions by your own fears. Edith was afraid her son would be angry over her will so she thought he was throwing her out.
- True value is what is attributed by the heart not what something costs. For Gerald, the photos, the watch, and the old cabin were more precious than millions of dollars.
Share this story with your friends. It might brighten their day and inspire them.
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