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.
Mom’s Hilarious Response After Her Daughter Called Her Fat at the Pool Has Everyone Cheering
Calling someone “fat” can be a hurtful insult. But why is that?
This question came up when a mother named Allison shared her story about a recent swimming trip with her children. When her daughter called her fat, 30-year-old Allison had a clever response, and her message is now spreading quickly online.
Allison Kimmey began dieting when she was just 14 years old. She managed to stay at a size two to four through graduate school, but it was tough, and she wasn’t happy. Three years ago, at age 27, Allison reached a size eight and realized she would be much happier if she stopped fighting against her weight gain.
To motivate herself, Allison started an Instagram account, @allisonkimmey, where she shares pictures and inspirational messages. Her body positivity spreads joy and encourages her followers, but her important message doesn’t always reach everyone.
**Me:** “Actually, everyone, every single person in the world has fat. But each of us has different amounts.”
**Her brother:** “Oh right! I have some to protect my big muscles! But you have more than me.”
**Me:** “Yes, that’s true. Some people have a lot, and others don’t have much. But that doesn’t mean one person is better than the other. Do you both understand?”
**Both:** “Yes, mama.”
**Me:** “So can you repeat what I said?”
**Them:** “Yes! I shouldn’t say someone is fat because you can’t just be fat, but everyone HAS fat, and it’s okay to have different fat.”
**Me:** “Exactly right!”
Not only did Allison want to teach her children how to talk to others, but she also felt it was important to spread the message that everyone is equal, no matter their body shape. Now, her post on Instagram has gone viral.
“If I shame my children for saying it, then I’m proving that it’s an insulting word and continuing the stigma that being fat is unworthy, gross, comical, and undesirable,” writes Allison.
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