Our beautiful Daisy was born on June 19th, 2023, weighing 8lbs 2oz. From the very beginning, she brought us a joy that words could never fully capture. Even before she entered the world, she was already a feisty little kicker, full of life and strength. From those early moments, we sensed she would be a fighter like no other.
Her heart defects were not detected during pregnancy. Everything seemed to indicate she was perfectly healthy. But just hours after she was born, a routine pulse oximetry test changed everything. I remember the alarm ringing and the nurse retesting, unable to believe what she was seeing. And then, suddenly, time seemed to stand still. Our precious girl was rushed away with her dad for urgent tests, and we were left suspended in fear, hoping for a miracle.
Hours later, the full reality became clearer. Daisy had four serious heart defects: double outlet right ventricle (DORV), transposition of the great arteries (TGA), a large ventricular septal defect (VSD), and dysplastic valves. Her tiny body carried a burden far too heavy for her age, and we were overwhelmed with grief, confusion, and fear. How could something so beautiful, so full of life, be facing such unimaginable challenges?
In those moments, there was no room for despair. Trauma and shock had to be set aside as we focused on supporting our daughter in every way possible. We quickly realized that while some babies were undergoing surgery and returning home within weeks, for Daisy, the hospital became our home. Between two specialized wards, we found care, compassion, and love—not just for her, but for us too. The teams that surrounded Daisy adored her; their dedication matched the strength she continually showed.
Daisy was remarkable. Through the pain, the CPAP machine she hated, the countless injections, scans, and procedures, she smiled. And when she was annoyed, she made it known, screaming at the nurses in a tiny but powerful declaration of will. She fought every day, and every day she made us prouder. Even in the hardest moments, Daisy showed courage and resilience beyond her three months.
But sometimes, life is too cruel. Despite the best care and all the love in the world, Daisy’s heart could not catch a break. Her lungs and brain were affected, and she suffered seizures and strokes. Initially, she still shone through, her tiny spirit unbroken. But after a night of over twenty seizures, our beautiful girl showed us she could fight no longer. We could never have asked more of her.
It was time to bring Daisy home. After professional consultations and unanimous agreement that nothing more could be done, we took her home for the final time. Those two days became the most precious days of our lives. Surrounded by family, singing, holding her, pouring every ounce of love we had into her, we treasured every heartbeat and every small moment. Even though she was not awake, I knew she could feel us.
In the early hours of September 10th, at around 3 a.m., Daisy took her last breath in the arms of her daddy and me. That moment is etched into my soul, a memory that will haunt and comfort me simultaneously. Even in sorrow, there was peace in knowing we gave her love, warmth, and comfort until her very last moment.
Although Daisy is no longer with us, her legacy is enormous. She taught everyone who met her about courage, resilience, and love in its purest form. Her life, though brief, inspired action. I have been advocating for pulse oximetry tests for all babies in every hospital, sharing her story on news channels, and raising awareness so that other families can have a chance to detect heart defects early. Daisy’s spirit lives on through this work, ensuring that her bravery helps protect others.
Daisy was special beyond measure. In her three months, she showed the world what it means to fight with strength, joy, and spirit far greater than her tiny body suggested. She will live on in our hearts, in every action we take, and in the countless lives she continues to touch through her story.
I would do it all again, just to hold her, to feel her warmth, and to be with her even for a moment. Daisy may have been small, but her heart was boundless, and her impact will never be forgotten.
Zosia’s Fragile Life: A Family’s Fight Against Osteogenesis Imperfecta.2298
When Zosia was born, the first sound she made was not the typical cry of a newborn, but a scream filled with pain. It was a terrifying introduction to life — a signal that our little girl had already endured suffering before even opening her eyes to the world. From that very first moment, we knew our journey as parents would be unlike any other.
We could scarcely believe it. How could something like this happen to our child? The nightmare became reality when doctors diagnosed Zosia with osteogenesis imperfecta, an incurable disease that leaves bones fragile and prone to spontaneous fractures. This was no metaphor. Our daughter, not yet a year old, had already experienced multiple broken bones: her arms fractured twice, and both legs had broken three times each. The enormity of this truth was overwhelming.
Osteogenesis imperfecta has transformed even the simplest moments of life into challenges. Our little girl is incredibly delicate and fragile, and even gentle touches or routine play must be carefully monitored to avoid injury. The ordinary joys of childhood — laughter, hugs, running, and playing — have become fraught with danger. Each day requires vigilance, patience, and constant care.
Despite these obstacles, Zosia’s spirit shines through. She is cheerful, mischievous, and full of life. We watch her flashes of a smile, her curiosity, and her playful energy, and our hearts ache and swell with love all at once. We imagine her playing hide-and-seek, running through the garden, or enjoying a simple game of tag — yet even these joyful moments carry the risk of another fracture.
From the very beginning, we knew we had to act quickly. On July 18, 2022, Zosia underwent her first surgery on her right femur. Eight months later, the left femur was operated on. But the journey is far from over. Doctors have now turned their focus to both of her shins, which will require surgical intervention to stabilize her fragile bones. Each procedure brings hope, but also fear — fear of pain, fear of complications, fear for her small body enduring so much.
The path ahead is long and costly. Zosia will require lifelong medication, and every two months, we must travel hundreds of kilometers to ensure she receives her treatment. The financial burden is overwhelming. The cost of surgeries, medication, and ongoing rehabilitation is beyond what we can manage alone. Yet we persevere, because every mile traveled, every injection administered, and every treatment undertaken is a step toward giving our daughter a life as normal and joyful as possible.
Despite the hardships, Zosia’s personality shines through the challenges. She is an incredibly smiling, cheerful little girl. Her laughter is contagious, her curiosity boundless, and her courage extraordinary. Each day, we strive to ease her pain, to protect her, and to give her moments of childhood that are not overshadowed by fear or injury.
As parents, we are devoted entirely to her well-being. Every choice we make, every sacrifice we endure, is for Zosia — the center of our world, the source of our strength, and the reason we keep moving forward even in the face of so many obstacles. Her resilience inspires us to remain steadfast and hopeful.
Unfortunately, the financial cost of treatment is beyond our reach. That is why we are reaching out for help. Any form of support — whether a donation, sharing our story, or raising awareness — can make a real difference in Zosia’s life. Every contribution helps alleviate her suffering, brings her closer to the care she needs, and ensures that our daughter can continue to grow, smile, and experience moments of childhood without constant pain.
Our plea is simple: please stand with us in this fight. Help us give Zosia the life she deserves. Every gesture, every act of kindness, every donation — no matter how small — carries hope. Together, we can ease her pain, support her treatment, and give her a chance to live a joyful, vibrant, and fulfilling life despite the fragility of her bones.
Zosia’s courage and spirit remind us daily that even the smallest children can teach the greatest lessons about resilience, hope, and the power of love. We ask for your help so that our daughter’s life can continue to be filled with laughter, discovery, and the simple joys every child deserves.
Zosia’s parents
