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.
Neighbor Refused to Pay My Daughter After a Week of Babysitting – You Won’t Believe How I Got Even
Lucy came home after a long week of babysitting, her face pale and her eyes filled with tears. My heart sank the moment I saw her, as my daughter rarely cried, and when she did, it was never like this—silent sobs, her chest rising with every shaky breath, her body radiating the kind of hurt that makes a mother’s heart ache.
I rushed to her side, placing my hands on her shoulders gently. “Lucy, what happened?” I asked softly, trying to keep my voice steady.
She wiped her tears away but didn’t speak right away. Her hands shook as she fiddled with her sweater, and I could tell something was deeply wrong. After a moment, she finally looked up at me, her voice barely audible.
“Mom, Mrs. Carpenter didn’t pay me for babysitting her kids,” Lucy whispered.
I frowned in confusion. “What? Why not?”
“She said it was a ‘life lesson,’ that I should’ve gotten everything in writing. Then she slammed the door in my face!” Lucy’s voice cracked, and fresh tears rolled down her cheeks. “She said babysitting was hard work, and that was payment enough!”
I could feel my blood starting to boil. Mrs. Carpenter had refused to pay my daughter for babysitting all week, dismissing it as a lesson in responsibility? My fists clenched as I tried to stay calm for Lucy’s sake.
Lucy’s voice trembled as she continued. “Her kids were terrible, Mom. They wouldn’t listen to me, they threw toys at each other, and when I tried to make them do their reading, they said, ‘Mom says we don’t have to.’ I worked so hard all week, and she acted like it didn’t matter.”
“Oh, sweetie,” I whispered, pulling her close. At 15, Lucy was trying so hard to be responsible, and this was her first real job. “How much did she owe you?”
“I babysat for four hours each day for five days… so $220. I was going to use it for an art course I really wanted to take,” she sniffled.
Without hesitation, I reached for my purse and counted out the money. “Here, you earned this.”
Lucy’s eyes widened. “Mom, no. She’s the one who owes me, not you.”
“Don’t worry about it. You worked hard, and you deserve to get paid. I’ll take care of Mrs. Carpenter myself,” I said, hugging her tightly. “I’m going to make sure she understands that cheating you isn’t something she can get away with.”
As Lucy headed to the kitchen for a snack, I began planning. I wasn’t going to let Mrs. Carpenter get away with this. But I knew that confronting her in anger wouldn’t work. I needed a smarter approach—one that would teach Mrs. Carpenter a lesson of her own.
That night, I lay awake thinking about Lucy’s excitement when she first got the babysitting job. She had been so proud, so eager to prove she could handle responsibility. And now, Mrs. Carpenter had robbed her of that joy. I tossed and turned, replaying the events over in my mind. By the time morning came, I had a plan.
At 10 a.m., I knocked on Mrs. Carpenter’s door, forcing a pleasant smile onto my face. She answered, looking surprised to see me.
“Rebecca! What brings you by?” she asked.
“Oh, I just wanted to thank you for the valuable life lesson you gave Lucy,” I said sweetly, watching as confusion flickered across her face. “You know, the one about contracts and trust?”
Mrs. Carpenter’s smile turned smug. “Well, yes. I’m glad you understand. Children need to learn things the hard way sometimes.”
“Oh, absolutely,” I replied, pulling out my phone. “I’ve been telling everyone about it. In fact, I posted about it in our neighborhood group.”
Her smile faltered. “Posted? In the neighborhood group?”
I showed her the post, along with the flood of comments from other parents in the neighborhood. Mrs. Carpenter’s face paled as she read through them.
“Melissa said she’d never trust someone who treats kids like that,” I said. “And Janet from the PTA? She thinks we should bring this up at the next school board meeting. Says it reflects poorly on the community.”
Mrs. Carpenter’s eyes widened in panic. “Rebecca, I didn’t mean for this to go so far—”
Mrs. Carpenter’s confidence crumbled, and she stammered something about a misunderstanding. But I wasn’t interested in her excuses. I gave her a final smile, turned on my heel, and left.
Later that evening, Lucy came rushing through the door, an envelope in hand. “Mom! Mrs. Carpenter paid me! She said there was a misunderstanding about when she was supposed to pay.”
I smiled, pulling her into a hug. “That’s great, sweetie.”
As Lucy headed upstairs, I couldn’t help but feel satisfied. Some people might say I’d been too harsh or petty, but I didn’t care. My daughter had worked hard, and she deserved to know her efforts had value. Sometimes, the best lesson isn’t about taking the high road—it’s about showing your child that no one has the right to take advantage of them.
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