In 2022, after years filled with hope and prayers, our dream finally materialized – we discovered we were going to be parents. The joy was immense. The pregnancy progressed smoothly, and each doctor’s appointment provided reassurance, filling our hearts with love and excitement. That was until the 20th week.
That day altered everything.
During a routine mid-pregnancy check-up, we opted for a fetal heart echo, just to be cautious. What was meant to be a peaceful moment turned into the moment our world shattered for the first time. The doctor informed us that our baby boy would be born with a complex congenital heart defect, necessitating surgery immediately after birth.
We wept for days. There were no words, no answers, only fear and anguish. Yet, we summoned our strength and went to the Institute of the Polish Mother’s Health Center in Łódź, where specialists monitored us until the pregnancy’s conclusion.
Then, on April 27, 2023, after months of anxiety and anticipation, our miracle arrived — Hubert. The moment we laid eyes on him, time stood still. However, our joy was fleeting. Within moments, he was taken from the delivery room to the neonatal ward and given medication to help him survive until his heart surgery.
At merely 14 days old, our little boy underwent his first open-heart surgery.
The operation saved his life, but complications arose. Hubert developed atelectasis in his left lung, left-sided diaphragm paralysis, and vocal cord paralysis. He had to remain in the hospital for weeks. We lived in a state of fear and fragile hope, learning to care for him amidst a world of wires, monitors, and medical equipment.
When we finally returned home — more than a month later — we felt like the happiest people alive. Despite all the pain and fatigue, we were together, and that was all that mattered. Hubert was delicate but filled with determination. We began rehabilitation immediately, and over time, he grew stronger. He smiled, played, and developed just like any other baby.
Yet, in our hearts, there lingered a shadow — the next heart surgery.
In February 2024, we were readmitted to the cardiology department in Łódź for tests ahead of the planned procedure. It was then that doctors discovered something new — elevated liver enzyme levels. Initially, we hoped it was merely a side effect of the medications. However, the numbers continued to worsen.
Concerned, we traveled to Warsaw to consult a liver specialist. More tests ensued. Then, just before Mother’s Day, we received a heartbreaking preliminary diagnosis — muscular dystrophy.
Further genetic testing confirmed our worst fears: Duchenne Muscular Dystrophy (DMD) — one of the most severe and untreatable forms. This condition attacks the muscles — all of them. The skeletal muscles that enable movement, the muscles that control breathing, and even the heart, which is already so vulnerable in Hubert’s case.
It was the second time our world crumbled.
We were inconsolable. Witnessing your only child — your miracle — confront such a harsh fate is unbearable. DMD gradually strips a child of movement, independence, and ultimately, life itself. Without treatment, Hubert will eventually lose the ability to walk, then to breathe, and will not survive into adulthood.
Yet, there is hope. A gene therapy in the United States presents a chance — perhaps the only one — to halt this disease before it’s too late. This treatment could save Hubert’s life.
However, the cost is astronomical: 17 million złotych (approximately 4 million USD).
Additionally, there are expenses for travel, rehabilitation, and months of stay abroad. It feels insurmountable. But for our son, we must make the effort.
Just a month ago, Hubert underwent his second open-heart surgery. The doctors repaired his tiny heart once more, and within a week, he was smiling, playing, and exhibiting the same indomitable spirit that characterizes him. Twice already, he has faced death and emerged victorious.
Now, we are seeking one more miracle — the third escape from death.
We are just ordinary parents. We cannot save him alone. But together, with your assistance, we can provide Hubert the life he deserves — a life free from pain and fear.
We are pleading for your support. Every donation, every share, every act of kindness brings us closer to saving our little boy.
Seventeen million złotych seems unattainable. But if 17 million hearts unite, it transforms into hope — real, living hope.
Hubert is a warrior. A small fighter with the heart of a lion. All he needs now is the opportunity to continue fighting.
Please, help us provide him that opportunity.
Help us save our son.
