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.
A single mom with four kids buys a used car, and the owner tells her to check the trunk when she gets home — and the story Begins .
Desperate for work, Jennifer accepted the job even though it meant traveling to a different city every day. She thanked the HR manager and headed home, where she told her kids she had finally found a job. After spending almost $30 on the cab ride, Jennifer realized she couldn’t afford to commute like that every day. It would be better to have her own car, but she didn’t have the money to buy one. She decided her best option was to buy a used car. She found one but wondered if the owner would agree to sell it for a lower price. “Would you be able to sell this car for $5,000? I’m a single mom with four kids,” she asked.
She explained that it had been hard for her to make money as a single mom of four, and she needed a car to take a job in a nearby city. When the owner heard about her situation, he agreed to sell the car for $5,000. “If you can buy the car by tomorrow, I’ll sell it to you for $5,000,” he said. Jennifer was very grateful for the lower price. She tried to get a loan from the bank to buy the car the next day, but her bad credit caused the loan to be rejected immediately.
Running out of options, Jennifer thought hard about what to do next. She couldn’t move to a new city because her oldest child, Ethan, had just started school near their trailer park. Also, rent in the nearby city was much higher, and she couldn’t take the trailer with her. She really needed a car to get to work and pick up her children from school and daycare. Then she remembered the gold chain necklace her late mother had left her, which had been in the family for generations. Even though it made her sad, Jennifer knew she had to sell it to buy the car and provide for her children.
She took the necklace to a pawnshop and said, “I’m sorry, Mom. I really need to do this right now.” The necklace was valued at $5,500, which made Jennifer happy because it was enough to buy the car and have some money left for daily needs. The next day, she went back to the car dealership and gave the owner, Jeff, an envelope with $5,000. “Thank you for agreeing to sell this to me. You have no idea how much this will help me and my children,” she said.
Jeff smiled and said, “Congratulations on your car. This is a great purchase.” While Jennifer was signing the paperwork, Jeff quietly put something in the trunk of the car. As she was about to drive home, he called out, “By the way, check the trunk when you get home. I left something for your children inside.” Jennifer was so busy commuting to work and taking care of her children that she forgot to check the trunk until she found a note in the glove compartment. The note said, “I hope you and your children like the gift I left in the trunk. May it be of great help to you.”
Curious, Jennifer opened the trunk and was confused at first when she saw only a white envelope. Then she realized it was the same envelope she had used to pay for the car. Inside, she found the $5,000 untouched. Overwhelmed by the man’s kindness, Jennifer drove back to the dealership after work to thank Jeff. He told her, “Life throws challenges at you, and it’s up to you to either overcome them or give in. I’m proud of you for staying strong for your children, and I thought you could use the money more than I could. Just remember to pay it forward.”
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