When little Zosia entered the world on December 4, 2024, in Amsterdam, her parents were filled with overwhelming love. She was small, perfect, and brimming with potential — their miracle after months of anticipation. “She’s our entire world,” her parents express gently. “The reason we rise each day.”
However, their joy was quickly overshadowed by anxiety. Almost immediately, Zosia faced challenges — her body frail, her breathing labored, her tiny form struggling to survive. Medical professionals initiated a series of tests, and one by one, the grim diagnoses emerged — each more heartbreaking than the last.
A Series of Diagnoses
After weeks of hospital stays and assessments, doctors provided a list of medical terms that would alter everything. Zosia was diagnosed with mutations in the SCN1A and TAOK1 genes, resulting in neonatal epileptic and developmental encephalopathy, severe epilepsy, multiple joint dislocations, and scoliosis.
“It felt like a relentless storm hitting us,” her mother remembers. “Each new diagnosis was another blow. We wished we could turn back time — to alleviate her suffering.”
The SCN1A mutation is known to cause catastrophic epileptic syndromes that can start in infancy and are often resistant to treatment. The TAOK1 gene, associated with brain development, impacts muscle tone and movement. Together, they signify a life filled with unpredictability, hospital visits, and constant vigilance.
A Daily Struggle for Existence
Since her arrival, Zosia’s life has been a delicate balance between emergencies and recovery. Her parents have adapted to the rhythm of medical alarms and oxygen monitors. Every seizure is a race against time. Every breath is invaluable.
She requires constant care, specialized medications, and respiratory assistance. Even the most basic activities — feeding, sleeping, holding her upright — come with significant risks.
Despite the challenges, her parents remain resolute. “When we hold her hand, she squeezes back,” her father shares. “That small gesture is her way of saying, ‘I’m still here.’”
Their days are filled with doctors, consultations, and therapies — anything that might alleviate her discomfort or strengthen her fragile body. Yet hope, though small, shines brightly in their hearts.
A Journey Back Home
Currently, the family remains in Amsterdam, where Zosia is receiving medical treatment. However, their aspiration is to return to Poland, where family and friends can provide support.
“We long for home,” her mother expresses. “We want Zosia to grow up surrounded by love — not hospital walls.”
Yet, returning home is not straightforward. Due to Zosia’s respiratory failure, she requires medically equipped transport — either an air ambulance or a specialized medical convoy — which is beyond the family’s financial means.
Once in Poland, they will encounter ongoing costs for rehabilitation, physical therapy, medications, and 24-hour care. These are not optional expenses — they are essential for Zosia to have any chance of improvement, even a slight one.
A Heartfelt Request
Zosia’s parents have invested everything they possess into her care — every penny, every ounce of strength, every tear. But now, they are in need of assistance.
“It’s difficult to ask for help,” her father confesses. “We never envisioned being in this position. But when it’s your child’s life at stake, pride becomes irrelevant.”
Every contribution, no matter how small, brings them closer to providing Zosia with the care she urgently requires.
Funds raised will be allocated to:
Safe medical transport from the Netherlands to Poland
Ongoing neurological and respiratory treatment
Intensive rehabilitation and therapy
Specialized medical equipment and medications
“Each day with her is a treasure,” her mother whispers. “We just want to hold onto that treasure a little longer.”
Hope for the Future
Despite the hardships, Zosia is a warrior. Her parents note that her spirit shines through even on the toughest days — a faint smile during therapy, a soft coo when they sing her lullabies.
“She may not be able to articulate words yet,” her father remarks, “but her eyes convey everything. She desires to live.”
For this courageous little girl, every breath is a testament to her strength. And for her parents, every moment is both a struggle and a blessing.
They understand the path ahead is uncertain, but they cling to — faith, love, and the generosity of strangers who may help them bear the burden of this fight.
“Zosia means everything to us,” they express. “We will do anything to give her a chance — a chance for a brighter tomorrow.”
💗 Please, assist Zosia in getting home and continuing her treatment. Every act of kindness, every prayer, every donation makes a difference — because even the smallest gesture of love can help save a life.
