After her son Benjamin passed away, Lisa Marie Presley kept his body on dry ice for two months for a very heartbreaking reason. Just under four years had gone since the terrible suicide death of her son Benjamin Keough, when Lisa Marie, 54, passed away in January 2023.
Lisa Marie, the sole child of Elvis Presley, departed from her twin children, Harper and Finley Lockwood, who are 16 years old, and her daughter Riley Keough, who is a star of Daisy Jones & The Six. Riley finished a book she had written, From Here to the Great Unknown, and it was published on October 8 following her death.
In her memoir, Lisa Marie discussed Benjamin’s sudden passing in 2020 and disclosed that she had held his body for two months before burying him in a casita bedroom. As she had explained to her father, Elvis Presley, “there is no law in California that requires someone to be buried immediately,” and she felt it was important to give Benjamin the time she needed to say goodbye.
Lisa Marie was just nine years old when Elvis passed away, so having his body at home and being able to visit and talk with him had been consoling. Throughout that time, she kept Benjamin’s remains at 55 degrees while debating whether to bury him in Graceland or Hawaii.
She acknowledged in the biography, “I became so accustomed to him being there, taking care of him… I was grateful that I could continue to raise him until I was ready to say goodbye, even if it was only for a short while longer.
Meet Twins with the Rare Benjamin Button Syndrome, Who Became Symbols of Resilience
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.
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