Until the very end, I lived in hope that it wasn’t true. I couldn’t—and wouldn’t—accept the thought that my son might be deaf. Even when fear crept in, I pushed it away. A mother’s heart refuses to believe what it is not ready to bear. I kept telling myself that the doctors were mistaken, that the next test would finally bring good news, that everything would somehow fall into place.
Mikołaj was born at 36 weeks of pregnancy. He was small, fragile, but beautiful—perfect in every way to us. Like every newborn in Poland, he underwent routine hearing screening shortly after birth. When the results came back abnormal, I felt a sharp sting of worry, but I clung to hope. Newborn tests can be wrong, people said. Premature babies often need time. I believed them, because I needed to believe them.
But the months passed, and with each additional hearing test, the truth grew heavier.
Every examination showed the same thing.
Mikołaj was losing his hearing.
It wasn’t sudden. It didn’t happen overnight. It disappeared quietly, piece by piece, without warning. At first, there were small doubts—why didn’t he react to certain sounds, why didn’t he turn his head when we called his name? Then the doubts turned into fear. And the fear slowly turned into certainty.
By the time Mikołaj was two and a half years old, he had lost his hearing completely.
Those words still echo in my mind.
Complete hearing loss.
In August 2019, our son received a cochlear implant in his right ear. It was one of the most emotional days of our lives. Fear mixed with hope, anxiety mixed with relief. We knew this was not a cure, but it was a chance—a fragile bridge between silence and sound. When, in December 2020, he received a second implant in his left ear, we allowed ourselves to dream again. Maybe now the world would open up to him. Maybe now he would hear our voices clearly. Maybe now life would finally become easier.
But our journey did not end there.
As if hearing loss were not enough, new medical concerns began to appear. Doctors discovered that Mikołaj has a cyst in the Rathke’s pouch, a rare condition that requires constant monitoring. Every year, he must undergo an MRI to make sure the cyst is not growing or threatening vital structures in his brain. Each scan brings anxiety, sleepless nights, and fear of what the next result might show.
Soon after, we learned that Mikołaj also has liver damage. His pancreatic and kidney enzyme results are very poor. Suddenly, our calendar filled with appointments. Neurologists. Hepatologists. Endocrinologists. Audiologists. Speech therapists. Rehabilitation specialists. We are under the care of numerous doctors, constantly searching for answers that never seem complete.
Our lives have become an endless cycle of tests, results, and waiting.
Waiting for explanations.
Waiting for clarity.
Waiting for hope.
Despite all of this, our focus has never shifted from what matters most—helping Mikołaj develop, communicate, and live as fully as possible. Rehabilitation became our everyday reality. Speech therapy sessions, auditory training, sensory exercises—hours and hours of hard work, patience, and repetition. Mikołaj works incredibly hard. He tries. He concentrates. He fights. Watching him struggle and persist at the same time breaks and strengthens my heart in equal measure.
Every cent we have goes into rehabilitation.
Not vacations.
Not comforts.
Not rest.
Everything goes toward giving our son a chance to reach the hearing and speech level of his peers. We want him to understand the world. To express himself. To one day sit with other children and talk, laugh, and be heard—not just with his ears, but with his voice.
A few days ago, we visited a geneticist.
I wasn’t prepared for what we heard.
After reviewing Mikołaj’s medical history, the doctor told us that there is a strong suspicion of a genetic disorder. Suddenly, all the puzzle pieces—the hearing loss, the cyst, the organ issues—seemed to point toward something deeper, something hidden in his genes. To confirm this, the geneticist recommended comprehensive testing of 27,000 genes.
Twenty-seven thousand.
The test could finally give us answers. It could explain why this is happening. It could help doctors tailor better treatment. It could tell us what to expect in the future. It could change everything.
But it comes at a cost we simply cannot afford.
The price is overwhelming. We already pour every possible resource into rehabilitation. We live carefully, modestly, always calculating what we can and cannot afford. There is no savings left to reach for. No hidden reserve. Just love, determination, and exhaustion.
Without genetic testing, we are moving forward blindly.
We don’t know what challenges may still be ahead.
We don’t know how to best protect Mikołaj’s health long-term.
We don’t know what else this condition may affect.
And yet, every day, rehabilitation continues. Therapy continues. Effort continues. Because stopping is not an option. Because giving up would mean accepting silence—not just in sound, but in hope.
Mikołaj deserves more.
He deserves answers.
He deserves the best possible care.
He deserves a future where his limitations do not define him.
That is why we are asking for help.
All funds raised go directly toward rehabilitation, therapy, and necessary diagnostics. Toward speech sessions that teach him to shape words. Toward auditory training that helps his brain understand sound. Toward genetic testing that could finally tell us the truth about what is happening inside his body.
Every contribution matters.
Every share matters.
Every act of kindness lifts a weight from our shoulders.
I never stopped believing in my son—not when the tests were negative, not when the silence deepened, not when the diagnoses multiplied. I believe in his strength. I believe in his future. And I believe that with your help, we can continue fighting for his voice, his understanding, and his place in the world.
Please help us give Mikołaj the chance to hear, to speak, and to live without barriers.
— Patricia, Mikołaj’s mother