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.
My grandson kicked me out of his wedding because of my ‘dress’. Karma hit back 5 minutes later.
The day of my grandson Justin’s wedding was one I had been looking forward to for months. I had meticulously chosen a dress that was elegant yet flattering, showcasing the results of a lifetime dedication to fitness. As a 72-year-old who still actively participates in sports, I was proud of my figure and wanted to feel glamorous for this special occasion.
However, as soon as I arrived at the venue, Justin’s face twisted in disapproval. He approached me, his tone harsh and his words cutting deep. “Grandma, what are you wearing? This is embarrassing for our family. You need to go home and change.”
My heart sank. I couldn’t believe what I was hearing. Was it so wrong for me to want to look feminine and feel beautiful at my grandson’s wedding? I had no intention of leaving or changing my dress, but Justin’s attitude made it clear I wasn’t welcome unless I complied. With a heavy heart, I decided I wouldn’t stay where I wasn’t appreciated. I informed him that not only would I not be returning today, but if he ever invited me to another event, I would wear the same dress.
The Unraveling
Just as I was grabbing my jacket, ready to walk out and never look back, my son – Justin’s father – rushed over to me, his face pale with urgency. “Mom, wait! You won’t believe what just happened. Justin, he…”
The words hung in the air as he struggled to catch his breath. Curiosity and concern made me pause. What could possibly have happened in the few moments since Justin humiliated me?
A Sudden Twist
We hurried back towards the main hall, where a scene of chaos had unfolded. Guests were murmuring, eyes wide with shock, and the air was thick with tension. As we pushed through the crowd, I saw Justin at the center of it all, looking pale and distressed.
It turned out that just moments after our confrontation, Justin’s bride, Emma, had called off the wedding. She had overheard his harsh words to me and decided that if he could treat his own grandmother with such disrespect, he wasn’t the man she wanted to marry. Emma’s decision sent shockwaves through the gathering, leaving Justin to face the immediate consequences of his actions.
The Lesson
Standing there amidst the stunned crowd, I felt a mix of emotions. Justin’s embarrassment was palpable, but there was also a sense of justice in the air. His behavior had consequences, and Emma’s bold decision had highlighted the importance of respect and kindness, values that should never be compromised.
Justin’s wedding day didn’t end as planned, this shook my grandson well. But perhaps it was a necessary wake-up call. As for me, I walked away with my head held high, confident in the knowledge that staying true to oneself and standing up for one’s dignity is always the right choice.
Leave a Reply