For months, silence wasn’t peace — it was pain.

Olek’s body is growing weaker. His muscles tighten until he trembles, and every movement feels like a battle. Still, every morning, he looks at us with that quiet determination that says, “I’ll keep trying.”

The next round of tests is coming soon, and it terrifies us. For most children, anesthesia is routine. For Olek, it’s life-threatening. Every time he goes under, we hold our breath, praying his heart will keep beating.

He’s stopped gaining weight, his ribs show through his fragile skin, but somehow — he still smiles. That small, brave smile keeps us standing when everything else feels impossible.

We don’t know what tomorrow will bring, only that we’ll face it together — with fear in our hearts, but faith in our hands.

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A Tiny Heart Fighting Against the Odds


Remaining Time 8:09

For months, the silence on our page wasn’t because things were better.
It was because they were harder than ever.

Hospitals, appointments, therapy sessions, sleepless nights — they have filled our days and stretched our hearts to the breaking point. Every time we thought the storm might calm, another wave came. Another test, another setback, another night spent watching monitors blink beside our son’s bed.

In August, we were admitted again — several days in the hospital, this time for a new round of heart examinations. The cardiology team performed a series of tests, their faces calm but careful. When the results finally came back, the news brought both relief and unease: there were no significant changes from the last visit.

That should have been good news.
And yet, we knew something wasn’t right.

Over the past weeks, we’ve watched our boy’s little body stiffen more and more. The spasticity — the muscle tension that grips him daily — has worsened. His legs tremble when he tries to move. His hands curl involuntarily, as if his tiny body were always bracing for pain.

He fights it bravely, though.
Every morning, we see the same determination in his eyes — that quiet spark that says, “I want to keep trying.”

But his body doesn’t make it easy.

Because of the way his nervous system functions, his muscles rarely rest. They stay locked, rigid, and tight. Each motion demands enormous effort. Every touch, every change of position, can trigger discomfort.

As parents, we do everything we can — massages, physical therapy, stretching exercises — but the truth is, his body needs more help than we can give. Specialized rehabilitation equipment could make a huge difference: standing frames, adaptive chairs, supportive braces. They are designed to reduce pain and help him build strength, but their cost is overwhelming.

We’ve spent countless nights researching, calling clinics, comparing models, wondering how we can possibly afford what our son needs. Because every small improvement — every smile that replaces a grimace — means the world to us.

And now, another challenge lies ahead.

On October 20th, we will travel to the Children’s Health Center in Warsaw for extensive cardiac and neurological testing. These tests will be done under general anesthesia — and that’s what terrifies us most.

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For Olek, anesthesia is not routine. It’s dangerous.
Each time doctors put him under, there’s a risk — a serious risk — that his heart could stop.

As parents, how do you sign a consent form when the thought of losing your child looms in the back of your mind? How do you sit in a sterile hallway, counting seconds, waiting for a doctor to emerge with news that could change your entire world?

The fear is indescribable. It’s like holding your breath for hours, praying that this time, you’ll hear those blessed words: “He’s okay.”

And yet, we have no choice.
These tests are essential. They may help us understand what’s happening inside his fragile heart and what can be done to protect it.

But lately, new worries have surfaced.

Olek has stopped gaining weight.
No matter how carefully we adjust his diet, no matter how many supplements and vitamins we add, his body just doesn’t respond. The scale remains frozen at ten kilograms — the same number it showed months ago.

We celebrate the smallest gains, even a few grams. But lately, there have been none. He’s thinner now. We can see the outlines of his ribs when we help him bathe. We feed him slowly, gently, encouraging him with every spoonful, as though love alone could add strength to his tiny frame.

And yet, he smiles.

That’s what breaks us the most — that even when his body fails him, his spirit doesn’t. He greets the nurses with that shy grin, waves to other children in the therapy ward, and laughs when bubbles float in the air during his sessions.

Those small joys are what keep us going.

We often remind ourselves that love can’t cure everything, but it gives us the courage to keep fighting. Because even on the darkest days — when exhaustion turns to tears and fear presses on our chests — we know we’re not alone.

Every message of support, every donation, every prayer whispered for Olek reminds us that compassion still exists in this world. It reminds us that even strangers can become part of a family’s fight for hope.

Right now, our biggest goal is to provide Olek with the rehabilitation tools and medical care he needs to ease his pain. The specialized equipment will help reduce the constant muscle tension that keeps his body locked in discomfort. It will give him a chance to move more freely, to stretch without pain, to rest without struggling.

It may not cure him, but it will let him live a little more comfortably.

We’re scared.
There’s no other way to say it.

We’re scared of the upcoming hospital trip.


Scared of the test results.
Scared of the risks that lie ahead.

But underneath all the fear, there’s something stronger — faith.

Faith that the doctors will find a way to help.
Faith that our little boy’s heart will keep beating through the anesthesia and the recovery that follows.
Faith that, one day, his pain will ease, even just a little.

When you live this kind of life — one filled with hospitals and monitors and constant vigilance — you learn to measure time differently. Not in weeks or months, but in moments.

Moments when his body relaxes, even for a few minutes.
Moments when he manages to lift his head on his own.
Moments when his laughter fills the room, and for a fleeting second, the fear disappears.

Those moments are everything.

So as October approaches, we are holding our breath, holding each other, and holding on to every ounce of hope we have left.

We don’t know what the future will bring.
But we know this — we will never stop fighting for our son.

Please, don’t leave us alone in this.
Every kind thought, every prayer, every gesture of support gives us the strength to face another day.

Because behind every hospital door, every medical term, and every tear-stained night — there is love.
A love so fierce, it refuses to give up.

And that love is what keeps our little boy’s heart beating.