When our son Leo entered the world, we believed we were celebrating the happiest moment of our lives. Although he was born with a blue hue, his Apgar score was flawless—10. He was breathing, crying, and everything appeared to be alright. Little did we know that with his first breath, Leo’s struggle for life had already commenced. This battle, filled with fear, hope, and heartbreak, would soon become our everyday reality.
The Beginning of a Long, Uncertain Journey
Just two days after Leo’s birth, as we were getting ready to head home, the doctors opted to test him for jaundice. What we assumed would be a routine examination quickly spiraled into a nightmare. The test results indicated something much more alarming. Leo started to experience drops in oxygen saturation and apneas. What began as a minor concern swiftly escalated into a serious issue. The doctors allowed me to hold him for a while, then placed him on oxygen, and each day brought new fears as we watched our baby struggle for breath.
On the sixth day, the doctors informed us that the night would be critical. If Leo had more apneas, he would need to be transferred to another hospital. Unfortunately, those apneas occurred. Amid our panic and confusion, we were asked if we wanted our son to be baptized. With shaking hands, we baptized Leo in that sterile hospital room, uncertain if he would survive the night. The weight of that moment—of not knowing if our baby would see tomorrow—was indescribable.
The Unknown Struggle
On the seventh day of his life, Leo was moved to a hospital in Ostrów Wielkopolski. My heart was shattered. My baby, still so small, was fighting for his life, and all I could do was wait, pray, and hope for a miracle. Leo spent a month in the hospital, undergoing countless tests. We still had no answers. Why was he experiencing sleep apnea? What was causing his condition? The doctors suspected laryngeal stenosis, but it was never confirmed.
On New Year’s Eve, we traveled to the Children’s Health Center in Warsaw, where specialists continued to examine Leo, desperately trying to stabilize him enough to avoid the need for oxygen. It felt like we were running out of time, and each day felt like a ticking clock, one that was slowly running out of time for our son.
The Unthinkable Diagnosis: Krabbe Disease
After months of uncertainty and frustration, the doctors decided to send Leo’s samples for genetic testing. Several serious illnesses were suspected, but one stood out—Krabbe disease, a rare, genetic, and fatal condition. We waited, hoping and praying for good news, but as the days turned into months, the anxiety became unbearable. We couldn’t wait any longer. The phone call came, and our worst fears were confirmed.
Our son had Krabbe disease—a condition that relentlessly robs a child of their abilities over time. Krabbe disease takes away everything: their strength, movement, sight, hearing, and ultimately, their life. The doctor was straightforward—if symptoms of Krabbe disease appeared, it would be too late for treatment. However, there was still hope for Leo. He had been diagnosed with the late-onset variant of the disease, which means that while time is still on his side, we must act swiftly.
A Glimmer of Hope: The Bone Marrow Transplant
The hope we clung to amidst the heartbreak was the possibility of a bone marrow transplant. Leo is a candidate for this procedure, which could potentially save his life and give him a chance to live, grow, laugh, and be with us. It is his only opportunity to overcome the disease, and we are doing everything we can to make it happen.
However, the journey to that transplant is anything but straightforward. We’re searching for a donor, and the process of testing, check-ups, and visits to various hospitals has been a logistical and emotional challenge. Every week, we travel to Wrocław and then to Warsaw, navigating a complex web of appointments, tests, and treatments. The costs are escalating rapidly—medical treatments, transportation, and special medications needed for Leo’s condition are accumulating. Preparing for the transplant will require even more—special hygiene products, an air purifier to safeguard Leo’s immune system, and private rehabilitation, as Leo won’t be able to attend public rehabilitation facilities after the transplant.
A Family’s Fight to Save Their Son
We cannot allow this disease to take our son from us. The thought of Leo not having the future he deserves—a future where he can run, play, and experience life to its fullest—is unbearable. That’s why we’re reaching out to you, asking for your help in giving Leo a chance at life. Every contribution, every share, every act of kindness brings us one step closer to saving Leo’s life. Your support, no matter how small, could be the key to his survival.
Please consider assisting Leo. Your donation will help cover the costs of his medical treatments, the bone marrow transplant, and everything that comes with the road to recovery. It will provide us hope for the future, and more importantly, it will give Leo a chance at a full life. We cannot do this alone—we need your help to ensure Leo’s story doesn’t end before it even begins.
A Call for Hope
We believe in the strength of community, in the kindness of strangers, and in the shared goal of saving a child’s life. Leo’s fight is far from over, but with your assistance, we can give him a chance to win this battle. Please help us fight for Leo’s future. Together, we can make a difference—together, we can give Leo the opportunity he deserves.
