Kornelia’s Fight Against CDKL5 Epilepsy: A Family’s Plea for Hope
From the moment she was born, little Kornelia has been fighting a battle no child should ever face. At just three months old, her parents were given news that shattered their world: their daughter was diagnosed with
For Kornelia, the cruelest symptom comes in the form of seizures. They strike daily, sometimes several times a day, and can last as long as five agonizing minutes. Her tiny body stiffens, her eyes roll to the side, and her parents are left helplessly watching as she battles through each episode. When the seizures subside, Kornelia is left drained—exhausted, weak, and without the energy to do the things most babies her age would be learning.
Despite powerful medications, steroid treatments, and repeated hospital stays, the seizures persist. Nothing has been able to give her relief. And as time passes, the consequences are becoming painfully clear.
The milestones that parents dream of—the first time a child sits up, reaches for a toy, babbles in delight—remain out of reach. Kornelia cannot sit on her own. She cannot hold objects or follow her family with her eyes. Most heartbreakingly, she does not respond to sounds or voices, leaving her parents wondering if she can hear or see them at all.
“It’s incredibly painful,” her mother says quietly. “We want so badly to connect with our little girl, but the disease keeps building a wall between us. Instead of celebrating her progress, we live in fear—asking ourselves if things will only get worse, and whether she will ever be able to live independently.”
Doctors have warned the family that the first year of Kornelia’s life is crucial. This should be the time when she begins learning new skills, tasting new foods, discovering the world around her. Instead, every day is a struggle just to preserve what strength she has and to keep stimulating her development as much as possible.
To give her a fighting chance, Kornelia needs intensive daily rehabilitation—sessions with a physiotherapist, speech therapist, and pedagogue. Vision therapy is also vital, as are regular hospital visits and checkups. As she grows, she will also require specialized equipment to help her function, equipment that can ease everyday tasks and give her opportunities to interact with her environment in ways she cannot on her own.
The needs are endless, and the costs are overwhelming. For an ordinary family, meeting them all is simply impossible.
Kornelia’s older brother, Jaś, is only two years older than she is. Still, his love for her is unshakable. He hugs her, kisses her, and constantly asks when she will be able to play with him. For their parents, these questions cut the deepest. They want nothing more than to tell their son that one day he and his sister will run, laugh, and play together. But the truth is uncertain. Doctors cannot say if Kornelia will ever gain independence, or if she will always remain locked within the prison of her disease.
“We have so many dreams,” her father explains. “We even made a list of things we want to do together as a family. Simple, everyday joys that most people take for granted. But this illness has stolen that from us and replaced it with endless hospital visits and therapy schedules.”
And yet, despite the exhaustion, the heartbreak, and the fear, Kornelia’s parents remain determined. “We don’t know what the future holds,” they admit, “but we know one thing: we will fight with all our strength for her.”
They cannot do it alone. Every day matters. Every donation, every word of encouragement, every act of kindness can help keep Kornelia moving forward. It can help her access the rehabilitation she desperately needs. It can provide the therapies and equipment that make even small progress possible. And above all, it can give her parents the strength to keep fighting for their daughter’s smile.
What they dream of is simple: that one day Kornelia might sit on her own, reach for her brother’s hand, laugh at his games, and share in the joys of an ordinary childhood. They dream of a future where the disease does not rob her of everything.
For that dream to become reality, they need help. Kornelia’s battle against CDKL5 epilepsy is long and uncertain, but with support, her parents believe she can face it with strength and dignity.
They ask, with hearts wide open: Join us. Join us in this fight for Kornelia’s future. For her chance to live, to grow, to play with her brother. For her chance at life itself.
The Day a Stranger Saved Santa
Sometimes, the difference between life and death comes down to a single decision—the choice to act when others stand still. For one man and his wife, a simple stop for dinner turned into a moment that would change two lives forever.
It began in the most ordinary way. They were pulling into a store parking lot when he noticed an older man lying motionless in the road. Without hesitation, he stopped the car and ran toward him. Another passerby was already kneeling beside the man, checking for a pulse. “Nothing,” the stranger said grimly.
Together, they pulled the man out of the road. Training and instinct took over. Kneeling on the asphalt, they began chest compressions—firm, steady, relentless. For five long minutes they worked in tandem, two strangers bound by urgency, while a crowd gathered but did not move to help. Time stretched, marked only by the rhythm of hands pressing against a silent chest.
At last, paramedics arrived. Defibrillator pads were placed, shocks delivered. Once, twice, again. The man’s body jerked with each surge of electricity, but the rescuers held their breath, waiting for the miracle of a heartbeat. Finally, the monitor beeped. A pulse. The man was rushed to the hospital, clinging to life by the thinnest of margins.
A police officer approached the rescuer and shook his hand. “He had a massive heart attack,” the officer explained. “If you hadn’t jumped in when you did, he wouldn’t have made it.”
The next morning, the rescuer received a call from the man’s family. They wanted to meet. At the hospital, he finally learned the man’s name: Stephen.
Stephen’s story was as extraordinary as his survival. Doctors revealed that he had gone into ventricular fibrillation—his heart had stopped three separate times. Few patients ever recover from such an event. “It’s been a long time since I’ve seen someone pull through,” one doctor admitted.
But Stephen was more than a patient. He was a beloved figure in his community. Every year, he dressed as Santa Claus, bringing joy to children at the local high school’s “Meet Santa” event. He was known for his humor, his warmth, and his generosity. Now, thanks to the quick actions of strangers, he would live to don the red suit again.
Meeting him, the rescuer found not a victim but a vibrant man full of wit and life. “Once I’m better,” Stephen said with a grin, “we’re going to share a few beers together.”
The encounter left a lasting impression. “This reminded me how quickly things can change,” the rescuer reflected. “One moment you’re grabbing dinner, the next you’re fighting to keep someone alive. Knowing what to do in an emergency can literally mean the difference between someone going home to their family—or not.”
It’s a truth that echoes beyond this single story. In every community, emergencies unfold when least expected—at stores, on sidewalks, in homes. And often, survival depends not just on medical professionals, but on ordinary people willing to step in, to remember their training, to act when others hesitate.
Stephen’s survival is more than luck. It is the direct result of courage, quick action, and the belief that a stranger’s life is worth fighting for.
This Christmas, when children line up to meet Santa, they will see more than a man in a red suit. They will see Stephen—a living reminder of resilience, of the fragility of life, and of the power of compassion.
And somewhere in the crowd, there will be someone watching with quiet pride, knowing that because he chose to stop, to kneel, to press life back into a still chest, Santa will once again spread joy to the world.
Sometimes heroes don’t wear capes—or even uniforms. Sometimes, they’re just people who refuse to look away.
