There are no words to describe the pain of losing a child. Hania is gone… yet her memory lives forever in the hearts of those who loved her and in the moments they shared that can never be taken away. Thanks to the help of many, Hania was able to spend precious time with her family, embraced, comforted, and surrounded by love.
Hania’s story spans just fifteen months, yet in that short time, she endured a lifetime of medical battles, uncertainty, and suffering. Born in August 2014, her arrival seemed normal. Her parents were relieved when a slight dilation of the renal pelvis was flagged for monitoring, a minor concern at most. But soon after her birth, Hania began showing signs that something was profoundly wrong. She experienced drops in oxygen saturation and required feeding through a tube. At only two weeks old, she developed a fever, and tests revealed meningitis. The next two weeks were spent in an incubator, receiving powerful antibiotics as doctors fought to save her fragile life.
Despite the early struggles, Hania slowly began to recover. She learned to feed from a bottle and adapt to the world outside the incubator. Her parents finally took her home, hearts full of hope but still weighed down by fear. However, shortly after, apneas began—episodes where Hania would stop breathing, turn blue, tense up, and struggle to regain her breath. Her parents remained vigilant, waking throughout the night to monitor her.
At just two months old, the family traveled to the Children’s Memorial Health Institute, where it was discovered that the apneas were caused by a left-sided congenital diaphragmatic hernia—life-threatening and previously undetected. Emergency surgery was performed successfully, but this was only the beginning of a long and grueling journey. Geneticists, pediatricians, and specialists conducted numerous tests, but a definitive diagnosis remained elusive. Hania even contracted her first urinary tract infection during this period, compounding the challenges her small body had to endure.
At eleven months, Hania finally received a diagnosis: Schinzel-Giedion syndrome, one of the rarest genetic conditions in the world, with only seventy documented cases. Children with this syndrome face severe developmental delays, poor weight gain, susceptibility to multiple organ tumors, and high risks of early death from infections or respiratory failure. For Hania, this meant that every day was a battle, and every milestone—holding her head up, sitting, or even smiling—was a victory.
The medical challenges were immense. Hania suffers from drug-resistant epilepsy, which repeatedly damages her developing brain. Her muscles are rigid and hypertonic, requiring constant rehabilitation to prevent contractures and maintain any degree of mobility. She relies on specialized equipment, including a wheelchair, a standing frame, and adaptive seating, each costing thousands of złoty, with minimal reimbursement available. Her urinary system is fragile, with bilateral stage IV vesicoureteral reflux. She has already endured nine urinary tract infections, many caused by antibiotic-resistant bacteria, leaving her with only one high-generation intravenous line to rely on—a fragile lifeline.
Hania has also experienced urosepsis episodes, bronchitis, and pneumonia, each threatening her survival. Despite all this, she has shown remarkable strength. She has defied the odds multiple times, surviving what would have been fatal events for most. She is currently under home hospice care, allowing her family to be close while still having access to 24/7 medical support. Nurses visit twice a week, and a multidisciplinary team of specialists—including neurologists, nephrologists, gastroenterologists, pulmonologists, cardiologists, ophthalmologists, ENT doctors, and geneticists—monitors her condition. The family often travels hundreds of kilometers to consult with experts who might offer new insights or therapies to improve her quality of life.
Every day for Hania is a delicate balance between hope and uncertainty. Her parents fight tirelessly to ensure she receives the care she needs, from intensive rehabilitation to ongoing medical monitoring. Yet the financial burden is overwhelming. The costs of treatment, therapy, and specialized equipment far exceed the family’s means.
Hania’s story is a testament to the fragility and resilience of life. It is a story of a little girl who faced unimaginable challenges, yet who brought courage, hope, and love into the lives of everyone around her. Her parents continue to fight not just for her survival, but for every moment she can experience as fully as possible.
Support for Hania means providing the medical care, rehabilitation, and equipment that allow her to live her life to the fullest possible extent. It means giving her family the strength to continue, even when faced with a disease that affects only a handful of children worldwide. Hania’s battle was short, but it was filled with courage, determination, and love. Her story remains a reminder that even in the harshest circumstances, compassion, support, and hope can change the course of a life.
Every donation, every word of encouragement, every shared story brings Hania closer to the care she needs. Her fight, though rare and difficult, is one that can inspire the world to rally for those most vulnerable.
Hania Sosnowska may have been born into a life of struggle, but she illuminated every room she entered with courage and heart. Let us honor her journey by continuing to support the children whose battles continue, so that others may live, grow, and thrive as she deserved to do.