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 Of Black And White Twins Boys Often Gets Asked Which One Is Hers
This 31-year-old Nigerian woman had no idea what she was about to go through when she gave birth in February of that year. She can now distinguish her sons’ identical twins with ease. Even though Daniel and David were born only a few minutes apart, they don’t resemble one another at all.
Albinos are both of Stacy and Babajide’s children, who are both black and reside in Lagos. The adorable twins frequently attract attention wherever they go as a result of their noticeably dissimilar appearances. David is stunningly white with pale skin and golden hair, whereas Daniel resembles his 5-year-old big sister Demilade and has dark skin and black curly hair.
After only a year, the twins had nearly 18,000 followers on Instagram thanks to Stacy’s decision to share the odd couple’s activities there.
The twins’ birth on February 26 of last year completely caught everyone off guard.
“We did not know about their differences while I was pregnant, the scan did not show such so it was a huge surprise and the most amazing moment when the first twin (Daniel) came out with black hair and the second twin (David) came out with gold hair. I had them through CS, so the doctors were like: “It seems you are having totally unidentical twins.” Before I knew it, nurses started coming out to look at them,” mum of three, Stacy, explained.
The twins could be clearly distinguished from one another since one was black and the other was white
Stacy shared with us her husband’s heartfelt response to this turn of events.
“Their dad was really overwhelmed and immediately named My Twin 2 (David) ‘Golden,’ so he fondly calls him Mr. Golden. He was all overjoyed seeing his boys. He stood for more than 10 minutes staring at them and said he was just looking at God’s wonderful work and that they are his best gift ever.”
David falls into the highly unusual category of albinism; just 1 in 20,000 infants are born with this condition.
Albinism is a congenital condition that alters appearance due to a lack of melanin, the pigment generated in the skin, hair, and eyes. All racial and ethnic groups are impacted, and the type of pigmentation affects pigmentation to varying degrees. With a birth probability of between 3,000 and 20,000, albinism is a rare condition. Albinos must exercise extreme caution because it may result in a number of skin and vision problems.
David has gorgeous golden hair and an exceptionally pale complexion due to oculocutaneous albinism. Fortunately, Stacy claims that David has no health issues.
Nigeria is one of the nations with the greatest prevalence of albinism in the world with over two million confirmed or suspected cases. However, the statistics show that there is still a lot of prejudice against this community because of the color of its members’ skin. Over 600,000 albino Nigerians experience discrimination and harassment from their peers, family, and communities, which frequently results in difficulties on the job and academic failure.
Stacy did claim that her two sons are both unconditionally and equally adored and that no one has ever said anything unpleasant about them to her.
“There’re always side talks whenever we go out, people often wanna know how and what’s happening and maybe due to their cute and adorable nature, you just wanna come close to say hello.”
The twins’ family has been receiving modeling offers from agencies in the UK due to their odd features. The family is ready to take advantage of any opportunities that may present themselves and has created an Instagram account to share their joy and draw attention to significant issues. Stacy and I decided to create an account for them in order to spread awareness since we believe they have a story to tell.
“They have two different amazing personalities, they are a year+ now, walking and very playful,” said Stacy
“Daniel is more expressive while David is an observer. Both of them are highly inquisitive. Daniel is a foodie while David is quite picky; Daniel is extremely playful while David chooses moments; Daniel always likes to play the bigger brother role; they are both energetic.”
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