An emotional, human-centered story of resilience, care, and the power of small victories.

From the moment she entered this world, Amelka Ryłka faced challenges most adults could not imagine. Born on June 13, 2019, at just 33 weeks of pregnancy, she arrived under a shadow of heartbreak. Her twin sister had passed away at 21 weeks, and her mother spent the remainder of the pregnancy living with fear, grief, and uncertainty. Amid that emotional storm, Amelka survived — but her life would be shaped by a series of rare, severe, and complex medical conditions.

A Complicated Beginning Before Birth

Between weeks 23 and 26 of pregnancy, MRI scans revealed that Amelka had suffered an abdominal stroke. The damage caused bone softening, hemorrhage, and ischemia — signs that her tiny body was already fighting a battle before she even took her first breath. Every ultrasound became a moment of tension as her mother wondered: Would her baby survive? What kind of life would she have?

When Amelka was finally born, the answers were even more complicated than anyone expected.

Early Diagnoses That Changed Everything

Shortly after birth, doctors identified a combination of severe conditions: secondary microcephaly, nystagmus, and profound visual impairment. By the time she was four months old, she began having violent and frequent seizures. A diagnosis soon followed — epileptic encephalopathy, a neurological condition that would affect every aspect of her development.

Before her first birthday, genetic testing delivered more difficult news:
➡️ A rare duplication of chromosome 5 affecting up to 30 genes.

This abnormality meant that her entire body — every organ, every system — required constant support, careful monitoring, and lifelong treatment.

Her parents realized that every therapy session, every dose of medication, every small action could determine her progress and comfort.

Living in a Body That Needs Constant Help

Today, Amelka is six years old. But developmentally, she remains at the stage of an infant.
She cannot sit, cannot stand, and cannot hold herself upright. She has no postural control. She receives her nutrition entirely through a PEG tube. Every physical movement — from turning her head to adjusting her position — requires the help of trained caregivers.

Yet despite these limitations, Amelka is deeply aware of the world around her.
She responds to voices, tracks familiar people with her eyes, and offers soft smiles when she feels safe and comfortable. Those smiles have become the emotional anchor for her family — proof that she feels connection, affection, and presence.

A Daily Battle Against Fragile Health

Amelka’s epilepsy is currently stabilized with immunoglobulin therapy, which offers rare moments of calm. But her vision remains at risk. She suffers from congenital cataracts, a condition that progresses quickly and threatens her remaining sight. She recently underwent successful surgery on her left eye in Belgium, and her right eye urgently requires the same intervention.

Her daily routine is intense and medically complex. She receives:

• Bobath and Vojta physiotherapy

• Vision therapy

• Speech and communication therapy

• Sensory integration therapy

Each session is designed to preserve what function she has left, prevent deterioration, and give her the chance to interact with the world — even in the smallest ways.

A Nervous System Easily Overwhelmed

Amelka’s body reacts powerfully to external stimuli. Noise can trigger spasticity or even seizures. Sudden movement can lead to tremors, rapid breathing, or uncontrollable reflexes.
That means every moment of her day — feeding, bathing, repositioning, resting — must be done with extraordinary care.

Her family jokes that she is “fragile as glass, but strong as a storm.” And it’s true. Even the smallest stimulus can overwhelm her, yet she continues to fight through every day with the stubborn resilience of someone who refuses to give up.

A Community of Specialists Working Together

Because her condition involves multiple systems of the body, Amelka is cared for by:

• Neurologists

• Neurosurgeons

• Ophthalmologists

• Cardiologists

• Gastroenterologists

• Orthopedists

• Rehabilitation specialists

Every treatment must be carefully coordinated to avoid complications while supporting her growth. Her life is a delicate balance of medicine, therapy, and compassion.

Education Tailored to Her Abilities

Amelka attends a special preschool where teachers and therapists follow a fully individualized learning plan. They focus on:

• sensory responses

• basic motor stimulation

• communication alternatives

• vision support

• emotional connection

Even though she cannot speak or move on her own, she participates in activities through touch, sound, light, and social interaction. The school helps her engage with her world — not just survive in it.

Moments of Connection That Mean Everything

Despite her profound disabilities, Amelka has moments that remind her caregivers of the bright little girl inside her fragile body. She smiles at familiar voices. She quiets down when music plays. She tracks a parent walking across the room. She sometimes holds her head for a moment longer than before.

To any other child, these moments might seem ordinary.
For Amelka, they are victories — hard-won, precious, and deeply meaningful.

A Life Defined by Courage and Care

Every day with Amelka is a balancing act: activity, therapy, rest, monitoring, and constant support. She cannot perform any self-care, and every movement requires assistance. But her family and care team remain fiercely dedicated. They celebrate every small achievement, protect her from overstimulation, and advocate for her specialized treatments.

Her life is shaped by seizure control, vision support, postural management, sensory therapy, and medical supervision — but also by love, softness, and hope.

The Story of a Little Girl Who Teaches Patience and Strength

Amelka’s journey shows what it means to live with a rare, severe congenital disorder — and what it means for a family to devote themselves completely to a child who requires extraordinary care.

Her life is full of challenges, yet also full of meaning:

• Every smile is a message.

• Every response is progress.

• Every day she endures is proof of her strength.

She teaches everyone around her about patience, resilience, and the power of love in the face of overwhelming difficulty.

Amelka Ryłka’s story is not just a medical journey — it is a testament to human presence, connection, and the relentless hope that even the most fragile life can shine with its own quiet light.