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.
My Husband Died in an Accident, but I Never Saw His Body — One Day, I Heard His Voice Coming from Our Little Daughter’s Bedroom
Grief plays tricks on the mind, but this? This was real. Kelly knew her husband’s voice, and she’d just heard it… coming from her daughter’s room. A chill ran down her spine. Jeremy had been dead for two years. So who — or what — was speaking in his voice? Then she stepped inside… and FROZE.
I’m Kelly. I’m 30, and my life has been a rollercoaster of love and loss. My husband, Jeremy, died in a car accident two years ago. I was eight months pregnant with our daughter, Sophia. One moment, I was painting flowers on the walls of her nursery, dreaming about our future. The next, I was getting a phone call that shattered my world.
A pregnant woman looking at her phone | Source: Pexels
I remember that moment like it was yesterday. The paintbrush slipped from my fingers, leaving a trail of pink down the wall.
“Miss Kelly?” the voice on the phone was gentle, practiced. “This is Officer Reynolds…”
“Yes?” My hand instinctively went to my swollen belly. Sophia kicked, as if sensing my fear.
“There’s been an accident. Your husband…”
“No,” I whispered. “No, please…”
A startled woman talking on the phone | Source: Midjourney
They told me the crash was bad — so bad that I shouldn’t see his body. I never got to say goodbye. Just a closed casket at the funeral, and that was it.
“Kelly, honey,” my mom had said at the funeral, holding me as I sobbed. “You need to stay strong. For the baby.”
“How?” I choked out. “How am I supposed to do this without him? He was supposed to be here. He was supposed to hold her…”
Men carrying a coffin | Source: Pexels
Two years later, I was doing my best to keep going, to be strong for Sophia. But the emptiness? It never really left.
And then, two days ago, something happened that made me question everything.
It was just a regular afternoon. I had put Sophia down for her nap in her bedroom and curled up on the couch with a book. The house was quiet. Peaceful.
Until I heard it.
The sound of a window shutting. Not loud — just enough to make me glance up. Probably the wind, I thought. But then, my blood ran cold when I… Oh my God… when I heard JEREMY’S VOICE:
“I love you forever.”
I swear to God, my whole body turned to ice.
It wasn’t a muffled memory in my head. It wasn’t wishful thinking. It was CLEAR AS DAY.
A terrified woman | Source: Midjourney
I sat frozen, my breath caught in my throat. My ears were ringing. My heart pounded so hard I thought I might pass out.
“Jeremy?” I whispered into the silence, my voice trembling. “Baby, is that you?”
No. No, no, no. Jeremy was gone. This was NOT POSSIBLE.
But I heard it. Again.
“I love you forever.”
It was coming from Sophia’s room.
A frantic woman standing at the doorway | Source: Midjourney
I shot up so fast the book tumbled off my lap. My mind raced with possibilities — was someone in there? Was I hallucinating?
Was Jeremy ALIVE?
I rushed down the hallway, barely feeling my feet hit the floor. My hands were ice-cold, and my stomach churned like I might throw up.
“Please,” I whispered as I ran, tears already forming. “Please, if you’re there…”
I pushed open Sophia’s door.
A terrified woman walking into a room | Source: Midjourney
She was sound asleep in her crib, curled up in a little ball, her tiny fingers clutching a teddy bear. The room was just as I had left it. No open windows. No shadows in the corner. Nothing.
But then, I heard it again.
“I love you forever.”
I swore my heart stopped.
“Jeremy?” My voice cracked. “Is this some kind of cruel joke? Please… I can’t… I can’t take this…”
I scanned the room, my hands shaking as I moved toward the window. Something had to explain this.
A little girl fast asleep while holding a teddy bear | Source: Midjourney
My fingers brushed against the glass. It was shut. Locked. Outside, a small tree branch rested against the pane, broken like it had fallen against it.
Okay. That explained the noise. But Jeremy’s voice?
My eyes darted back to Sophia. She stirred in her sleep, hugging the bear tighter.
“Dada,” she murmured in her sleep, and my heart shattered all over again.
And then it hit me.
The bear.
I dropped to my knees beside her crib, hands trembling as I reached for it. Pressed it.
“I love you forever.”
My chest squeezed so tight I thought I might collapse.
A startled woman holding a teddy bear | Source: Midjourney
Jeremy’s voice… It was coming from the bear.
“Oh God,” I sobbed, clutching the bear to my chest. “Oh God, Jeremy…”
I sat on the couch, staring at the bear like it might come to life.
I had no memory of buying this. Had someone given it to Sophia?
And then I remembered. A week ago, we had celebrated Sophia’s second birthday. My mother-in-law, Gloria, had given her this bear.
A little girl celebrating her 2nd birthday | Source: Pexels
“Look what Grandma got you!” I had said, trying to sound cheerful despite the ache in my chest. Another birthday without Jeremy.
I had barely looked at it at the time. It was just another stuffed animal.
But now? Now I needed answers. So I called Gloria.
She picked up on the second ring. “Kelly, hi, sweetie! Everything okay?”
An older woman holding her phone | Source: Midjourney
I gripped the bear tighter. “Did you know this thing plays Jeremy’s voice?”
Silence.
Then, a quiet, almost hesitant, “Oh… did it finally play?”
My stomach twisted. “Finally? What do you mean FINALLY?”
Gloria sighed. “I was wondering when you’d hear it.”
I sat up straighter. “Gloria. What did you do?”
A woman talking on the phone | Source: Midjourney
“Kelly, please,” her voice wavered. “Just let me explain…”
“Explain what?” I demanded, my voice rising. “Explain why you thought it was okay to… to…”
I couldn’t even finish the sentence.
Gloria showed up an hour later, looking almost nervous. She sat across from me, hands folded, eyes scanning my face.
“I just… I thought it would help,” she said softly.
I placed the bear between us. “Help who?”
Two women talking to each other | Source: Midjourney
She exhaled. “Sophia. And you.”
I stared at her.
“Kelly,” she reached across the table, taking my hand. “Every time Sophia asks about her daddy… every time I see you trying to explain… it breaks my heart.”
“And you don’t think this breaks mine?” My voice cracked. “To hear his voice again, out of nowhere?”
Gloria swallowed. “After Jeremy died, I kept thinking about how Sophia would never know her dad’s voice. So I took a recording from your wedding video. You remember his vows?”
My throat closed.
“‘I love you forever,'” she whispered.
Oh my God.
A woman overwhelmed with emotions | Source: Midjourney
“I remember,” I choked out. “He… he practiced those vows for weeks. Said he had to get them perfect…”
She clasped her hands together. “I had it sewn into the bear before her birthday. I wanted her to have a piece of him. To know he’s always with her.”
I blinked hard, staring at the table, my mind spinning.
She had meant well. I knew that. But I felt so blindsided.
“Gloria,” I said, my voice barely above a whisper. “You should have told me.”
“I know,” she admitted with a fragile smile. “I just… I didn’t want to upset you.”
An older woman smiling | Source: Midjourney
“Upset me?” I laughed bitterly. “I thought I was going crazy. I thought… for a moment, I thought he was…”
“Alive?” Gloria finished softly. “Oh, sweetheart…”
She moved around the table, pulling me into her arms as I broke down.
“I miss him so much,” I sobbed. “Every single day…”
“I know,” she stroked my hair. “He would be so proud of you, Kelly. So proud of how you’re raising Sophia.”
I didn’t know what to say.
I wasn’t angry. I wasn’t relieved. I was just… overwhelmed.
A distressed woman | Source: Midjourney
That night, I sat in Sophia’s room, watching her sleep. The bear was in my lap. My fingers traced the soft fabric as I stared at my little girl — the daughter Jeremy never got to meet.
She looked so much like him. The same curve to her nose, the same dimple when she smiled, and the same sparkling blue eyes.
“You would have loved her so much,” I whispered into the darkness. “She’s perfect, Jeremy. Just perfect.”
I pressed the bear one last time as a familiar voice filled the room and my heart:
“I love you forever.”
A lump formed in my throat. I wiped my eyes quickly, swallowing down the ache.
I missed him.
A heartbroken woman holding a teddy bear | Source: Midjourney
Sophia stirred, her eyes fluttering open. “Mama?”
“Hey, baby girl,” I whispered, reaching to stroke her cheek.
“Bear?” She reached for the teddy.
I handed it to her, watching as she pressed it to her chest. Jeremy’s voice filled the room again.
“That’s your daddy,” I told her, my voice thick with tears. “He loves you so, so much.”
A cheerful little girl holding a teddy bear | Source: Midjourney
“Dada?” She looked at the bear with wide eyes, then back at me.
“Yes, sweetheart. That’s Dada.”
She hugged the bear tighter, closing her eyes. “Love Dada.”
And for so long, I thought I had lost everything. But here, in my daughter’s arms, was a piece of him.
I leaned down and kissed Sophia’s forehead.
“You’ll always have him with you, my sweet girl,” I whispered. “Always.”
The grief was still there. It always would be.
But for the first time in a long, long time… I didn’t feel so alone.
A grieving woman holding herself together | Source: Midjourney
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