Every day, Maksym Głowienka’s parents find themselves grappling with the same painful question:
“Why our child?”
Why did destiny choose for little Maksym Głowienka to endure such suffering? What transformed a life that should have been filled with first words, first steps, laughter, and joy into a narrative of pain, hardship, and despair?
Maksym is too young to comprehend the gravity of his situation. He battles Lesch–Nyhan syndrome, an exceptionally rare genetic condition that cruelly strips him of control over his own body. This disorder confines him within himself—his mind remains sharp and aware, yet his muscles betray him every moment of every day.
Each day begins with the same heart-wrenching routine. His parents carefully lift him from bed, assisting him to sit, stretch, and move. His muscles tense painfully; his tiny hands shake with uncontrollable spasms. At times, his own body feels like an adversary. Yet, behind his weary eyes, there’s a flicker of light—a gentle, courageous spark that refuses to extinguish.
Every action is a struggle. Every sound he produces is a victory.
For Maksym, even the most basic tasks—grasping a toy, eating, or turning his head—require immense effort. The illness contorts his body and strains his tendons. His parents understand that there is no cure, only care and therapy to slow the disease’s progression, alleviate pain, and provide him with some comfort and dignity.
Thus, rehabilitation has become their daily strategy—hours of stretching, massaging, and guided movements that prevent his little body from becoming painfully rigid. It’s exhausting for everyone involved, but it’s the only way to offer Maksym a chance at a brighter future. The therapy aids him in maintaining his posture, safeguarding his delicate spine, and strengthening the muscles that still respond to love and effort.
However, the struggle extends beyond the physical realm. Lesch–Nyhan syndrome introduces numerous unseen challenges. The condition complicates swallowing and chewing, necessitating regular speech and feeding therapy for Maksym. His kidneys require constant monitoring to avert serious complications. Each medical appointment brings a fresh wave of anxiety—and another bill.
Yet, the most terrifying symptom is one that is difficult to articulate: self-mutilation.
Due to the disorder’s impact on his brain, Maksym is compelled to bite his lips and tongue uncontrollably. He doesn’t intend to—it’s beyond his control. The only barrier between him and excruciating pain is a special orthodontic device, a protective brace he must wear nearly all the time.
Yet, the device frequently fails. The metal wires can snap under the strain of his movements, and as his teeth grow, its effectiveness diminishes. Each time this occurs, his parents are plunged into panic—frantically searching for a dentist, a specialist, anyone who can fix it swiftly. Every hour without the brace feels like an eternity of dread, as Maksym could injure himself at any moment.
The thought of their little boy harming himself—unknowingly, unwillingly—is what keeps them awake at night.
Despite the challenges, the Głowienka family remains resolute. “We can’t allow this illness to rob him of his chance,” they assert. Thus, they continue to fight—for rehabilitation, for medication, for specialized equipment that can ease Maksym’s life.
However, the financial burden is staggering. The costs of therapy, supplements, and ongoing medical checkups are painfully high. Without continuous treatment, Maksym’s muscles will continue to weaken, his spine will curve, and the pain will intensify.
Last year, through the generosity of strangers, the family managed to raise enough funds for a year of rehabilitation and medical support. For twelve months, Maksym received the essential care he needed—care that allowed him to smile again, to reach a little further, to sit up straighter. Every gesture of support, every message, every donation meant the world to them.
Now, the family faces the same battle once again. Maksym’s illness doesn’t pause, and neither can they. They are reaching out once more—not by choice, but out of necessity.
“We are eternally grateful to everyone who assisted us last year,” his parents express.
“It’s because of you that our son still has a chance. Please, help us continue this fight.”
This is not merely a tale of illness. It’s a narrative about love in its purest, most unbreakable form—the love of parents who would sacrifice anything to spare their child even a moment of suffering. It’s about a little boy who battles a war he cannot comprehend, yet never surrenders.
Maksym’s smile—delicate, quivering, but genuine—is a testament that even amid the darkest struggles, hope can still thrive. Every act of kindness, every bit of support, illuminates his world and fortifies his parents’ hearts.
Let’s not allow this light to dim. Let’s stand with Maksym.
Because sometimes, the smallest boy embodies the greatest courage—and the most significant battles are won not through strength, but through love.
