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.
Poor boy pays bus ticket for a woman and her baby – Later, the woman helps the boy
“The good you do today may be forgotten tomorrow. Do good anyway,” – Mother Teresa.
Have you ever noticed that those who don’t have much are the kindest people of all? Maybe it is like that because these people know the feeling of being helpless and they don’t want anyone else to ever feel that way.
This heartwarming story which was shared on AmoMama restores our faith in humanity. It reminds us that there are still good people out there and that no matter how small an act of kindness is, it always goes a long way.
A woman named Sandra Anderson found herself in trouble after marrying her husband and the father of her baby daughter Ava. He turned out to be abusive and made Sandra’s life a living hell.
Sandra’s mom warned her of the type of person her husband could be, but she decided to marry him anyway.
Unable to put up with the abuse any longer, Sandra took her baby and sought shelter at her friend Bethany’s place. She decided to stay there until she found the courage to tell her mother what had happened.
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Unfortunately, she received a call from the hospital and was informed that her mother had a heart attack. Panicked, Sandra wrapped Ava in a blanket and headed towards the bus. The weather was extremely cold and this poor mother couldn’t wait to get on board. However, once in, she realized she forgot her wallet and was unable to pay for the ride.
Sandra tried to explain to the driver that she was in a hurry and needed to get to the hospital as soon as possible, but he demanded she gets off the bus.
As desperate Sandra headed towards the bus’ door, she heard a voice saying, “I will pay for her fare! Please don’t tell them to leave.”
When she turned around, she noticed that the person who offered to pay for her ride was a young boy. She sat next to him and thanked him for his kindness. The boy introduced himself as Nicholas and explained how his mother always taught him that “if you have the means to help someone, you should always do so!” He went on to say that he was traveling home after visiting his ailing grandmother.
Sandra asked for his address because she wanted to thank Nicholas’ mother for raising such a caring boy.
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The following day, Sandra went to Nicholas’ house. However, once there, her heart broke into a million pieces. Nicholas and his mom lived in a crumbling two-room cottage. The mother looked extremely tired. It was obvious she worked hard in order to provide for her son, whose father left her after he learned she was carrying his baby.
Sandra went to her friend’s place and told her about Nicholas. She explained how she wanted to start a GoFundMe page in order to help them, and Bethany offered to share it on the social media where she had a huge number of followers.
To everyone’s surprise, the GoFundMe attracted the attention of many people and money started pouring in. Believe it or not, Sandra managed to raise over $1 million.
When she took the money to Nicholas and his mother, they couldn’t believe their eyes. That meant a new lease on life for them and the grandmother.
Never in a million years did the young boy believed his kind act would change his life for the better.
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