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.
Jennifer Garner made a decision to save her family’s history
Jennifer Garner is one of the most loved celebrities because of how relatable and approachable she seems. Her Instagram account is brimming with wholesome content about being a mother and navigating through life.
Patricia English Garner is Jennifer Garner’s mother. As a young girl, Patricia had a lot of sweet memories of growing up at a farm in Locust Grove, Oklahoma.
She even recalls how her parents bought the piece of land that has stayed in their family for generations. Her parents bought the piece of land in 1936, with a bonus her father had received from fighting in World War I.
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The family had only $700 to purchase the land at the time. She recalls how her veteran father and mother did not even have a car at the time they bought the land. They had to hire someone to take them to the property.
“My parents didn’t even have a car, so when they heard about the land that was for sale, they hired someone to drive them to the property. The farm consisted of a two-room house and 20 acres–minus 1 acre at the heart of the property, which was a Native American cemetery,” Patricia said.
Mother told me the story of Dad leaning on his heels and negotiating all day over $20. When they finally agreed on a price, the deal was sealed, and the land was purchased. It’s been in our family ever since,” she ended.
Over the years as everyone grew up and moved away, the farm did not have one set of owners. It kept switching ownership from one family member to another as it was bought and sold repeatedly. Then finally, in 2017, Jennifer Garner decided to purchase the farm herself.
And she did not just purchase the farm for the sake of memory but she had the vision to turn it into a profitable business once again. To do so, she hired her uncle Robert and aunt Janet, who had previously owned the farm to help her with it.
It had been 40 years since the farm had been planted and tended to. In the past, her mother and her siblings had been avid farmers and sold pecans as well as grew lettuce, radishes, and potatoes.
And Jennifer wanted to bring that back. She established “Once Upon a Farm” with co-founders Ari Raz, John Foraker, and Cassandra Curtis. The idea was to grow organic fruits and vegetables that could be made into nutritious food for children.
She said she had been dreaming about the project for a while, “once upon a time… we dreamed of bringing baby food back to the roots with organic fruits and veggies harvested from local farmers, blended with love and served fresh from the fridge. We dreamed of feeling less stressed about mealtimes because we could feed our little ones foods that give them all the nutrients they need – and then some!”
Jennifer says giving busy moms access to nutritious food is important to her.
The company was started in 2018 and since then has been majorly successful. Their products are stocked at some of the biggest retailers in America and are also sold online on the company’s website.
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