Spinal muscular atrophy does not arrive loudly. It does not strike all at once. It comes quietly, methodically, switching off the body piece by piece. First the muscles of the arms and legs. Then the trunk. Then the muscles that allow a child to swallow, to cough, to breathe. Mobility disappears. Eating disappears. Breathing becomes a mechanical act. And finally, life itself begins to slip away.
SMA.
Three letters that change everything. Three letters that shatter dreams, redefine love, and turn every single day into a race against time. Fear is no longer an emotion that comes and goes — it becomes a constant companion. Because with SMA, every morning could be the last.
This is the reality of my son’s life.
My son was born on May 3, 2018. Like any parent, I believed that the day of his birth would be the happiest day of my life. And for a brief moment, it was. I held him, looked into his tiny face, and imagined a future filled with first steps, first words, scraped knees, laughter, and growing independence.
That future vanished almost immediately.
Jaś was diagnosed very early with SMA Type 1 — the most severe form of the disease. It is a diagnosis that comes with brutal clarity. A child with SMA1 will not learn to sit up on his own. He will not learn to walk. He will not lift his head. He will not cry out with strength. His muscles will weaken day by day, even though his mind remains alert, aware, and full of life.
As if that weren’t enough, Jaś was also born with a heart defect — a ventricular septal defect. His tiny body was already fighting more battles than it should ever have been asked to face.
At just seven weeks old, he had to be intubated. At four months, he underwent a tracheotomy. Because he cannot swallow safely, he is fed through a tube. Breathing, something most of us never think about, is something he cannot do without help. A ventilator stands guard over him day and night, an electronic guardian angel ensuring that each breath continues.
His childhood has not been spent on playgrounds or in classrooms. It has been spent in hospital rooms, intensive care units, and emergency departments — surrounded by alarms, tubes, and the constant presence of pain and fear. This is not a fate that should ever belong to a child, let alone a newborn who has done nothing but exist.
Living with SMA is like living with a ticking time bomb.
Every day is a struggle, and it is hard to know where to begin when describing what our lives look like now. Perhaps it starts with the fact that my son is completely dependent on others for every aspect of his existence. Or with the reality that I had to give up my job entirely, because caring for him requires full-time availability — 24 hours a day, seven days a week.
Rehabilitation is not optional. It is essential. Each movement, each tiny skill Jaś gains, comes only through hours of daily therapy. Progress happens slowly, and only if the work is done consistently, without pause. There are no days off. There is no rest from the disease.
We fall asleep with fear. We wake up with fear.
SMA becomes an unwanted but ever-present member of the family — one that dictates schedules, limits possibilities, and constantly reminds us of how fragile life can be.
And yet, in the middle of all this, there is love.
Jaś is surrounded by people who fight alongside him every single day. We do everything we can to make sure he is part of our family’s life, not hidden away by his illness. We take him on walks. We go on trips when it is safe. We show him the world, because we do not know how much time he has in it. Every experience matters. Every smile matters. Every moment counts.
If love alone could heal, my son would be healthy today.
But love, as powerful as it is, does not stop SMA.
What it can do is help us keep fighting.
The financial burden of this disease grows alongside our child. Rehabilitation and therapy alone cost around 1,000 PLN per month — 12,000 PLN per year. Specialist consultations are constant. Proper equipment is essential: a specialized stroller, seating systems, arm and leg braces — costs that reach tens of thousands. Genetic testing alone costs thousands more. These are not luxuries. They are necessities for survival and dignity.
I know that the worst moment for a parent will come someday. SMA does not offer comforting illusions. But until that day arrives, I want to do everything within my power to ensure that my son’s life, however long it may be, is lived with dignity, comfort, and as much joy as possible.
Even if his time is shorter than that of healthy children, he has the right to fully experience it.
So I ask — not for miracles, but for help. Help us slow the disease, even a little. Help us buy time. Help us keep Jaś with us for as long as possible.
Because every extra day matters.
Every breath matters.
And every child, no matter how sick, deserves the chance to live surrounded by love.