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.
Millionaire Finds Out His Daughter and Four Grandchildren Have Been Living in a Car for Years
A woman who was kicked out by her rich father at sixteen for taking up with a poor man ends up living on the streets with her four children after her husband died.
Steve Walton was far from thrilled when his butler told him that Pastor Morris was waiting to see him. He was tired after a long flight from Singapore and in no mood for the man’s lectures or pleas for support for the community.
He had the pastor shown in and waved an impatient hand at his greeting. “Get on with it, man!” he snapped. “What is it that you want this time?”
“Mr. Walton, I saw Susan,” the pastor said quietly, and Steve’s heart nearly stopped. His only daughter had left his house nearly fifteen years before, never to be seen again…
“Susan?” Steve cried anxiously. “Where? When? How is she?”
“I was in Los Angeles, helping out a friend who has a mission among the homeless and that’s where I saw her,” the pastor said.
“She was a volunteer? Did you tell her I’ve been looking for her?” asked Steve.
“No,” Pastor Morris said gently. “She wasn’t a volunteer, Mr. Walton. She’s homeless. She and her children are living in a car.”
Steve found himself so dizzy he had to sit down. “Homeless? My Susan? Children?” he gasped.
“I’m afraid so,” the pastor said. “And she wouldn’t even listen to me when I told her to come home.”
“But why?” asked Steve angrily. “She’s not with that loser anymore, is she?”
“Her husband passed away three years ago, Mr. Walton,” the pastor explained. “And she told me she wouldn’t bring her children into a house where their father is despised.”
Steve Walton felt that old familiar wave of rage sweep through him. Fifteen years later, Susan was still defying him! He remembered the scene in his study, and Susan’s steady eyes looking into his as he ranted.
“Pregnant at sixteen, and by the GARDNER!” he’d screamed. “Well, we are going to have THAT taken care of, and HE’S fired! You will never see that man again!”
“THAT is my baby, daddy,” Susan had said in a tremulous voice. “And HE is the man I love. I’m going to marry him.”
“You marry that man and you’re on your own, Susan, do you hear?” Steve shouted furiously. “No more money, nothing! You marry him and you get out of my house!”
Susan had looked at him with tears in her eyes. “I love you, daddy,” she’d said. Then she turned around and walked away. Even though Steve had set detectives to find her, no one had been able to trace her.
“How many children?” he asked Pastor Morris.
“Four,” the pastor said. “Three girls and a boy. Beautiful children.”
Steve picked up his phone and spat out orders for his plane to be readied. “Pastor, would you come with me to Los Angeles, take me to my little girl?” he asked quietly.
The pastor nodded, and within two hours, the two men were on board Steve’s private jet winging their way south. There was a limo waiting for them, and the pastor directed them to a parking lot outside a large mall.
At the furthest end of the lot, a pickup truck was parked, with a tent set up at the back. Pastor Morris had told Steve that when Susan’s husband died in a work accident, the insurance company had refused to pay out and the bank foreclosed on the mortgage.
Susan had piled the children and their few belongings into the old pickup. She worked at the mall as a cleaner. She and the children used the mall’s facilities and bought whatever was leftover at the restaurants at the end of the night.
Still, she had managed to keep the four children fed, clean, and in school. As the two men approached the truck, they heard cheerful voices and laughter. Then two children tumbled out of the back.
The biggest girl, about fourteen, was laughing as she tickled a boy of about seven. The children stopped and gaped at Steve and Pastor Morris. “Mom!” the girl yelled. “That old preacher friend of yours is here!”
A well-remembered voice asked from inside the tent, “Preacher Morris?” Then Susan climbed out and Steve could see the shock in her face when she saw him standing next to the pastor.
“Daddy?” she asked, and her eyes filled with tears.
Steve was shocked. His daughter was barely thirty-one, but she looked much older. Her face was worn and lined with worry and suffering, her hands coarsened by hard work.
“Susan,” Steve cried. “Look at you! Look at what HE did to my princess! I wanted so much for you! And you married that loser! What could he give you? Poverty?”
Susan shook her head and said, “He loved me, daddy, and he gave me 4 beautiful children. He died, and I had nowhere to go, but I’ve done what I can for my children. I will always love the father of my children, daddy, just like I’ve always loved you.”
Steve found that he had tears running down his face. “Forgive me, Susan,” he sobbed. “Please forgive me. Come home, I want you all to come home with me. Let me help you take care of the children!”
Steve found himself holding his weeping daughter and knew that everything was going to be alright. Susan introduced him to his three granddaughters, then she placed her hand on the boy’s shoulder. “And this,” she smiled, “is little Stevie!”
“You named him after me?” Steve asked, astounded. “After what I did?”
“I love you, daddy,” she said softly. “Don’t you know that?”
That afternoon, they all flew home to Texas. It was the beginning of a better life for all of them.
What can we learn from this story?
Love and accept your children unconditionally. Steve was furious with Susan for loving a poor man and made the biggest mistake of his life by losing his daughter.
Don’t judge people for their wealth or influence. Steve hated his son-in-law because he was poor, but he was a loving husband to Susan and a dedicated dad.
Share this story with your friends. It might brighten their day and inspire them.
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