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.
Meet the 8-Year-Old Who Created a Breathtaking Jesus Painting—Prepare to Be Amazed
Akiane Kramarik painted a beautiful picture of Jesus called “Prince of Peace” when she was just 8 years old. This amazing artwork was forgotten for 16 years after it was stolen, sold by mistake, and kept away in darkness. Now, it has been brought back to the light for everyone to see.
Now 28 years old, Akiane Kramarik is a best-selling author, entrepreneur, and philanthropist. She is known for her beautiful spiritual paintings, which feature her amazing brushstrokes. When she painted “Prince of Peace,” she felt a strong urge, inspired by a recurring vision, to create an image of Jesus as a “profound role model for humanity.”
At just nine years old, Akiane appeared on the Oprah Show and showcased her art, which was much bigger than her small frame. Among her paintings was the famous portrait of Jesus, “Prince of Peace,” created with her special techniques.
“You’re obviously gifted. Where does this come from?” Oprah asked her.
“It comes from God,” Akiane confidently answered.
In another interview, when Akiane was just 10, she was asked how she knew it was God speaking to her. She replied, “Because I can hear His voice. His voice is quiet and beautiful.”
Interestingly, Akiane’s family is not religious, and they never talked about God in their small-town Idaho home.
“It wasn’t just art that was happening. Along with the art, there was a spiritual awakening,” said Akiane’s mother, Forelli Kramarik, who grew up in an atheistic family in Lithuania. “It all began when Akiane started sharing her dreams and visions. My husband, who was a former Catholic, did not share the same beliefs. We didn’t pray together, didn’t talk about God, and never went to church. Then suddenly, Akiane started talking about God.”
Akiane was homeschooled and didn’t have babysitters or a television, so she wasn’t influenced by anyone outside the home, her mother explained. “We were always with the kids, so we knew these words from Akiane about God didn’t come from outside influences. But suddenly, there were deep conversations about God’s love and His place in our lives, and she described everything in great detail.”
Akiane said her portrait of Jesus was inspired by a vision she had since she was a preschooler. She explained that she would illustrate her visions through poetry and writing, but it became too “complex to describe through words, so I painted.”
She added, “I always think about Jesus and talk about Him. I was searching for a model of Jesus for a long time. When I couldn’t find anyone, I suggested to my family that we pray all day for God to send the right one.”
The family prayed, and then a very tall carpenter—like Jesus, who was also a carpenter—showed up at their door looking for work. Akiane remembered almost fainting when she saw him. “I told my mother that was him. I want him to be my model,” she said.
Inspired by the image in her dreams and using the carpenter as her model, Akiane painted “Prince of Peace,” a painting that is now priceless and recognized all over the world.
“Prince of Peace” showcased Akiane’s vivid and detailed techniques, which were impressive for such a young artist. The painting was sent to an exhibition but was stolen during the journey. A few years later, it was finally returned to Akiane, but when it came back, it was covered in sawdust, which she carefully cleaned off.
The family tried to share Akiane’s spiritually inspired portrait with the world again, but a clerical mistake put the painting up for sale instead of for exhibition. “Prince of Peace” was sold to a private collector, and after a long court battle to get it back, which ended with the painting stored under a dark stairwell, Akiane decided to focus on creating new masterpieces, which received praise worldwide.
Not willing to lose hope, Akiane, whose talents helped lift her family from poverty, believed she would see her “Prince of Peace” again. In the meantime, she traveled to over 30 countries, helping different groups of people with her art and sharing her message of peace and spirituality. She also kept the memory of “Prince of Peace” alive by selling more than 100,000 prints.
In 2019, something incredible happened.
The “Prince of Peace” painting was put up for sale and purchased for $850,000 by an anonymous family. It’s said this family is “one of the world’s most distinguished and esteemed families.”
The new owners see themselves as the protectors of the original painting. They believe it is their mission to safeguard it for future generations, allowing its story to inspire and touch millions of people.
After almost 20 years, Akiane unwrapped her precious “Prince of Peace.” With tears in her eyes, she dropped to her knees. In a recent CBS interview, she said, “It was amazing to me. To be able to see this in the light again, after so many years.”
She added, “It’s still surreal to me. I’m not gonna lie… Love is so powerful. It will always show up on time for people who need it most.”
“Akiane: The Early Years,” showcasing the famous “Prince of Peace” painting, is now on display at the Belóved Gallery in Marble Falls, TX.
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