We have recently spent over 40 days in hospitals with our son, and yet another stay in the neurology ward awaits us. Each day has been a struggle, a battle against illnesses no child should face, and as parents, the helplessness we feel is overwhelming.

Our journey took a frightening turn when an ambulance rushed Michał in a state of severe epilepsy. He had stopped responding to his medications, and the intensity of his seizures was terrifying. As a result of these relentless attacks, Michał lost the ability to walk, regressed in his speech, and his strength completely abandoned him. Witnessing our little boy, once active and lively, become so fragile was heartbreaking.

The Return of Auto-Inflammatory Attacks

As if the epilepsy was not enough, Michał’s ultra-rare auto-inflammatory syndrome struck again. This genetic disorder, known as APLAID (Autoinflammatory disease with Phospholipase Cγ2-associated antibody deficiency and immune dysregulation), caused immense pain throughout his tiny body. Watching him endure this pain, unable to express it fully, tore at our hearts.

The combination of neurological challenges and the recurring auto-inflammatory attacks has left Michał in a fragile state. After the Easter holidays, he must return to the neurology ward for further tests and modifications to his treatment plan. We are praying that the adjustments will help stabilize him, but even when his condition improves, his journey will be far from over.

The Need for Rehabilitation

Once Michał’s condition is stable, he will need intensive rehabilitation, a process that could restore some of his lost abilities and give him a chance to regain independence. He will require a specialized rehabilitation camp, where trained therapists will guide him through daily exercises, therapies for speech, mobility, and muscle strength.

Unfortunately, the cost of such a rehabilitation program is enormous. As parents, we want to give Michał every opportunity to heal and grow, but we cannot do it alone. Every session, every specialized exercise, every therapy device comes at a high price—beyond what we can manage on our own.

A Life Full of Challenges

I often dream of hearing that my son is simply healthy. To most, a child walking, talking, and playing seems normal. For us, it remains a dream—a fragile hope that sometimes feels just out of reach.

Michał is only three years old, yet his life has already been filled with battles no child should endure. From birth, he has struggled with congenital immunodeficiency, leaving him vulnerable to infections and complications. A year ago, doctors diagnosed him with an ultra-rare genetic disorder, APLAID, which disrupts his immune system and causes recurring inflammation and pain.
But this is not the end of his challenges. Michał also suffers from

drug-resistant epilepsy, low muscle tone, asthma, and multiple other complications. Despite medical intervention and ongoing treatment, his condition has shown little improvement. To better understand his unique case, doctors recommended

Whole Exome Sequencing (WES), a genetic test that could provide crucial insights into his disease and guide his treatment.

The Burden of Treatment

The WES test is not covered by the national health system, and its cost far exceeds what we can afford while also paying for daily medications, regular doctor visits, therapies, and rehabilitation. Each month is a balancing act between treatments, equipment, and basic needs, but we refuse to give up. Michał deserves every chance to live a life with comfort, hope, and as much independence as possible.

Despite the enormous challenges, Michał’s spirit inspires us every day. Even in the hospital, he shows resilience beyond his years. Every small movement, every attempt at speech, every smile is a victory. We celebrate each milestone, knowing that behind every small success is immense struggle, determination, and the hope that he will someday overcome more of the obstacles his young life has faced.