When a child is born, the world seems to pause in a moment of pure joy. Every heartbeat, every tiny sigh, fills parents with love and hope. But that joy can turn to fear in an instant when we learn that our little one has been born with a serious illness. Questions flood the mind, many of them unanswerable. Among them, one stands out above all: why must this defenseless little one fight so hard to survive?
Our son, Julian Kukuczka, was born with a congenital heart defect so severe that from his very first seconds, his heart did not beat like a healthy newborn’s. It was too slow, unable to sustain his tiny body. The doctors acted quickly—a pacemaker had to be implanted immediately to maintain a normal rhythm and give him a chance at life.
The news that followed was overwhelming. Julian’s heart defect was incredibly complex. Specialists in Poland warned us that the procedure would be extremely difficult. Many had no experience performing such surgeries. It became clear that only a doctor with extraordinary expertise could give our son a chance. After extensive research and consultations, we found him: Professor Edward Malec, an outstanding Polish cardiac surgeon with years of experience in the most challenging pediatric heart procedures.
Choosing him was not a decision; it was an urgent necessity. But alongside hope came the heavy burden of reality: funding. Cardiac surgery of this complexity costs tens of thousands of euros—far beyond what we could manage. Yet, giving up was never an option. We knew we would move heaven and earth to raise the money needed to save our child.
Julian’s first surgery, performed in Germany under the guidance of Professor Malec, was a success. The relief we felt that day is impossible to put into words. For a while, we could breathe again. Julian returned home, his heart functioning well, and he began living a life just like any other child. He ran, played, laughed—his courage hidden beneath the surface of everyday normality. Regular cardiology checkups were the only reminders that his heart was exceptional, fragile, and remarkable.
But life with a congenital heart defect is never straightforward. During one routine checkup, a concern arose: a weakening in the contractility of one of Julian’s ventricles. The moment we had dreaded, the one we had pushed to the back of our minds, had come. An invasive cardiac catheterization confirmed what we feared—Julian’s heart would require another operation.
Childhood heart surgeries buy time. They allow these small warriors to survive, grow, and develop. But the heart is also growing alongside the child. Components implanted when Julian was tiny could not grow with him. Now, as his body requires more oxygen and blood flow, his heart must adapt to entirely new conditions. Without intervention, his heart will be forced to work harder, which could lead to irreversible damage to other structures.
There is no alternative. Julian’s heart needs another surgery—one that will give him a future. Once again, we want to entrust our son’s life to Professor Edward Malec and his extraordinary team. Once again, we are faced with the daunting task of raising the necessary funds. This time, the amount is 34,800 euros.
We appeal from the deepest corners of our hearts for help. Every donation, every share of our story, brings us closer to giving Julian the life he deserves. A life where he can run freely, laugh without pain, and grow into a healthy, happy child. Every act of kindness gives him hope, every gesture of support strengthens our fight.
We are eternally grateful to everyone who has helped us in the past, who continues to help, and who will stand with us now. Julian’s journey is far from over, but with your help, the next chapter can be written—one filled with love, life, and a heart that beats strongly, freely, and fully.
Please, join us in giving Julian another chance at life. Help him stay here with us, where he belongs—healthy, happy, and surrounded by love. Because every heartbeat counts, and Julian’s heart is counting on all of us.
Remembering Isaac: A Heart Warrior Forever in Our Hearts.2217
Today, on National Bereaved Parents Day, we pause to remember Isaac — a little boy whose courage, spirit, and life, though tragically short, continue to inspire countless people. Isaac was just four months and eight days old when he left this world, leaving behind a family and a community forever changed by his journey.
Isaac was diagnosed before birth with a congenital heart condition. From the earliest moments, his parents were told the defect could be repaired. But life, as it often does, proved unpredictable. Even after initial surgeries, his heart remained fragile, and complications began to mount. Over the next few months, Isaac would undergo four open-heart surgeries — each one a testament to both his incredible strength and the tireless dedication of the medical teams at Leeds Congenital Heart Unit.
His mum, Leanne, remembers those early days vividly: “Isaac was so incredible and should have lived a full life. He put up a major fight to be here every single day. He was incredible, inspiring, and a true warrior.” For Isaac’s family, every heartbeat, every moment, and every tiny milestone were precious victories. Each day with him was a mixture of hope and heartbreak, a fragile balance of joy and fear.
Yet even as they faced unimaginable sorrow, Isaac’s family found strength in the support that surrounded them. The Children’s Heart Surgery Fund (CHSF) provided not only vital resources but also emotional support that helped guide them through the most challenging days. From comfortable family rooms to thoughtful gestures that eased their burdens, CHSF ensured that the family could focus on their little boy without being overwhelmed by the logistics of hospital life. Leanne reflects, “Without CHSF’s support, our time would have looked very different. The Family Support team helped us more than we can ever express, and we will forever be grateful.”
In Isaac’s honor, family and friends have come together in an extraordinary display of love and remembrance. From cake sales and growing moustaches to running marathons and walking the Yorkshire Three Peaks, this remarkable group has raised over £26,000 for CHSF. These funds are already making a tangible difference, supporting the heart unit, its patients, and other families walking similar paths. Every penny raised ensures that children like Isaac and families like his receive care, comfort, and support when it matters most.
Two Katie Bears now sit at home, gentle reminders of Isaac’s bravery and the love that surrounds his memory. They are more than keepsakes; they are symbols of hope, resilience, and the enduring impact a single child can have on an entire community. Leanne explains, “My other sons have the bears in Isaac’s memory, and they remind us every day of how important it is to keep his spirit alive.”
The fundraising efforts in Isaac’s name are a testament to the power of collective action. What began as a personal grief has grown into a movement of support, care, and inspiration. Friends and family have chosen to transform their sorrow into action, honoring Isaac not just with remembrance but with tangible impact for others. Each walk, each marathon, each donation contributes to a better future for children facing similar heart conditions.
Isaac’s story is also a reminder of the fragility of life and the profound resilience of families navigating the challenges of congenital heart disease. His journey, though brief, demonstrates courage, determination, and the transformative power of love. He may have left this world too soon, but his legacy endures — in the hearts of his family, in the memories of his friends, and in the countless lives touched by the generosity and care inspired by his life.
On this National Bereaved Parents Day, CHSF remembers all families who have lost a child to congenital heart disease. We honor their courage, their love, and their unwavering commitment to raising awareness and support for heart warriors everywhere. We vow to continue providing care, comfort, and hope for children and families at Leeds Congenital Heart Unit, ensuring that the memory of brave little hearts like Isaac’s continues to inspire action and compassion.
Isaac’s fight may have ended, but his spirit lives on. His story reminds us that even the smallest hearts can leave the biggest impact, and that through support, love, and community, every child’s courage can echo far beyond their time on this earth.
In memory of Isaac, and in honor of all heart warriors, we continue to stand together — to support, to care, and to ensure that no family faces these challenges alone. His bravery, his fight, and his legacy are forever etched into the hearts of all who knew him and all who are touched by his story. 🩷💚💜💙
