There isn’t a single day that goes by when his parents don’t ask themselves the same question:
“Why our child?”

Why did fate decide that little Maksym Głowienka must suffer so deeply? Why did the life that was supposed to be filled with first words, first steps, laughter, and playground joy become instead a story of pain, struggle, and helplessness?

Maksym is not even old enough to understand what’s happening to him. He suffers from Lesch–Nyhan syndrome, an extremely rare genetic disorder that cruelly robs him of control over his own body. It’s a condition that traps him inside himself — his mind bright and aware, but his muscles rebelling against him every second of every day.

Each morning begins with the same heartbreak. His parents lift him gently from bed, helping him sit, stretch, and move. His muscles tense painfully; his small hands tremble with spasms he cannot stop. There are moments when his own body seems like an enemy. And yet, behind his tired eyes, there’s light — a soft, brave spark that refuses to die out.

Every movement is a fight. Every sound he makes is a triumph.

For Maksym, even the simplest actions — holding a toy, eating a meal, or turning his head — demand tremendous effort. The disease twists his body and pulls at his tendons. His parents know that there isno cure, only care and therapy to slow the progression, to ease the pain, to give him a bit of comfort and dignity.

And so, rehabilitation has become their daily battle plan — hours of stretching, massaging, and guided movement that keep his little body from freezing into painful stiffness. It’s exhausting for everyone involved, but it’s also the only way to give Maksym a chance at a better tomorrow. The therapy helps him maintain his posture, protect his fragile spine, and strengthen the muscles that still respond to effort and love.

But it’s not just about the physical struggle. Lesch–Nyhan syndrome brings countless invisible battles. The disease causes difficulty swallowing and chewing, forcing Maksym to undergo regular speech and feeding therapy. His kidneys must be monitored constantly to prevent serious complications. Every doctor’s visit means another wave of fear — and another bill.

Yet the most horrifying symptom is one that words can hardly describe:self-mutilation.

Because of the way the disorder affects his brain, Maksym is driven to bite his lips and tongue uncontrollably. He doesn’t mean to — he can’t stop. The only thing that stands between him and unbearable pain is aspecial orthodontic device, a protective brace he must wear almost all the time.

But the device often fails. The metal wires can break under the force of his movements, and growing teeth make it less effective with time. Each time that happens, the parents are thrown into panic — searching desperately for a dentist, a specialist, anyone who can repair it quickly. Every hour without the brace feels like an eternity of terror, because at any moment, Maksym might injure himself again.

The thought of their little boy hurting himself — unknowingly, unwillingly — is what keeps them awake at night.

Despite everything, the Głowienka family refuses to give up. “We can’t let this disease take away his chance,” they say. And so, they keep fighting — for rehabilitation, for medication, for specialized equipment that can make Maksym’s life just a little easier.

But the cost is overwhelming. The therapy, supplements, and constant medical checkups are painfully expensive. Without ongoing treatment, Maksym’s muscles will continue to weaken, his spine will twist, and the pain will worsen.

Last year, thanks to the kindness of strangers, the family managed to raise enough money for a year of rehabilitation and medical support. For twelve months, Maksym received the care he desperately needed — care that allowed him to smile again, to reach a little farther, to sit up straighter. Every gesture of support, every message, every donation meant the world to them.

Now, the family faces the same fight once more. Maksym’s disease doesn’t stop, and neither can they. They’re reaching out again — not out of choice, but out of necessity.

“We are forever grateful for everyone who helped us last year,” his parents write.
“It’s because of you that our son still has a chance. Please, help us continue this fight.”

This is not just a story about illness. It’s a story about love in its purest, most unbreakable form — the love of parents who would give anything to spare their child even a single moment of pain. It’s about a little boy who fights a battle he can’t understand, yet never gives up.

Maksym’s smile — fragile, trembling, but real — is a reminder that even in the darkest struggles, hope can still exist. Every act of kindness, every bit of support, brings light to his world and strength to his parents’ hearts.

Let’s not let this light fade. Let’s stand with Maksym.

Because sometimes, the smallest boy carries the greatest courage — and the biggest battles are won not with power, but with love.