Iris’s Fight for Life: A Five-Month-Old Warrior Named Hope.1808
At just five months old, Iris LaValle has already revealed herself to be a child of extraordinary strength.
She was born with a rare mitochondrial disease so unusual that it doesn’t even have a formal name, and from the very beginning, her young life has been filled with hospital stays, treatments, and challenges no baby should ever have to endure.
Children’s Hospital in Pittsburgh has become almost a second home for her, a place where the beeping of machines replaces lullabies and where every small sign of progress feels like a victory.
For Iris’s parents, Casey and Amanda, these months have been a whirlwind of exhaustion and devotion, as they balance hospital life with the needs of their other two children, Owen, age seven, and Eliana, just two years old.
Amanda, a speech and language therapist, uses both her professional experience and her deep love as a mother to advocate for her daughter’s care.
She understands the complex medical language and can anticipate Iris’s needs in ways others cannot, but she also carries the weight of starting a new job and managing her household when she is away from the hospital.
The pressure on her shoulders is immense, yet her determination never falters.
Casey, a devoted father, pours himself into many roles—baseball coach, new business owner, husband, and caregiver.
He runs from the ballfield to the hospital, from work meetings to late-night vigils at Iris’s bedside.
He is doing everything he can to keep the family afloat financially while also making sure that Amanda never feels alone in this fight.
His presence is steady, his love unwavering.
Financial strain, however, is a constant shadow. Though Medicaid provides some relief, it cannot possibly cover the full scope of Iris’s care.
Travel costs to and from the hospital, countless meals eaten on the road, the endless refills of medications, and specialized feeding supplies all add up.
Medical bills grow larger with each passing week, and Casey and Amanda have sacrificed savings, sleep, and every ounce of energy to give Iris the care she needs.
And yet, despite the hardship, hope is what carries them forward. Iris herself is the living embodiment of that hope. Her middle name, Hope, is not just a word but a truth her family clings to daily.
Amanda describes her as having “third-child sass,” a spirited spark that shines even on the hardest days.
In the midst of machines and wires, Iris finds a way to show her personality, to remind everyone that she is still here, still fighting, still full of life.
Owen and Eliana are constant sources of joy and grounding. Owen, at just seven, already shows maturity beyond his years, helping where he can and comforting his parents when he senses their exhaustion.
Eliana, still so little, brings innocence and laughter, giving her baby sister kisses and lightening the heaviness of hospital days.
Together, the siblings create moments of normalcy that keep their parents’ hearts from breaking under the weight of uncertainty.
The LaValle family has always been known for their kindness and strength, qualities that now define them more than ever.
But even the strongest families need help. They cannot carry this journey alone. They need the love of their community, the support of friends and strangers, and the prayers of those willing to lift them up.
Every act of generosity—whether it is a prayer, a meal, a donation, or simply sharing their story—makes a difference.
Each contribution tells Casey and Amanda that they are not alone in this battle.
Each gesture gives Iris not just resources, but a community of people who believe in her, who believe in her fight, who believe in her future.
Iris’s journey is far from easy, and the road ahead is full of unknowns, but her story is not one of despair—it is one of courage.
She proves daily that even the smallest among us can carry a spirit strong enough to move mountains. She is more than her diagnosis.
She is a daughter, a sister, a symbol of love and light, and her resilience is inspiring everyone who knows her.
The LaValles continue walking this path with faith, with determination, and with the unwavering love they have for their children.
They invite all of us to join them, to pray for Iris, to support their family, and to hold onto hope alongside them.
Because with each act of kindness, the burden grows lighter, and the road ahead becomes just a little more bearable.
Please keep Iris in your prayers, remember her story, and if you are able, offer support to her family as they continue navigating this journey.
For Iris, every smile is a triumph, every breath a miracle, and every moment a chance to remind us all of the strength that comes from love and hope.
"A Fight for Every Breath: Marcelek’s Journey".1948
The pregnancy with our little Marcelek went as smoothly as anyone could hope. Every check-up, every ultrasound, everything seemed perfect. I waited for his arrival with a heart full of joy and anticipation. His older sisters were equally excited, counting down the days until they could finally meet their baby brother. We dreamed of holding him, introducing him to our family, and starting a new chapter of happiness together.
When the day of delivery finally arrived, I was calm and confident. Everything seemed to go according to plan. Marcelek was born, and the doctor lifted him into my arms. He received full points on the Apgar scale, a moment of pure joy I will never forget. I felt relief wash over me, thinking that our family had been blessed with a healthy, beautiful baby boy. Even in my darkest thoughts, I never imagined the tragedy that awaited us just around the corner.
On his second day of life, the first signs of trouble appeared. The doctors noticed that Marcelek had no sucking reflex. This simple inability to feed properly immediately set off alarms. He needed specialized care, and we had to transfer him to another hospital’s neonatal pathology unit. I left the hospital where I had delivered, despite having undergone a cesarean, because I could not bear to be apart from my newborn son. I needed to be by his side, no matter what.
Things quickly worsened. By the fifth day, Marcelek’s condition deteriorated dramatically. He was admitted to the Intensive Care Unit (ICU), fighting for his life. A staphylococcus infection had invaded his fragile body, and soon after, sepsis followed. For ten long days, he remained on a ventilator. Watching him struggle to breathe was terrifying beyond words. Amid all of this, he began experiencing epileptic seizures, adding another layer of fear and uncertainty to our lives. Each moment was a battle, and every day felt like walking a tightrope over a deep abyss.
The doctors performed countless tests. Bloodwork, imaging, metabolic panels—everything imaginable was done. Yet, no one could provide a clear answer. They were as baffled as we were, and I felt helpless as a mother. The waiting, the uncertainty, the fear—it was overwhelming. Eventually, they decided that genetic testing might hold the answers we desperately needed, though the results were expected to take up to six months.
On December 17th, we were transferred to a hospital in Łódź, as the doctors in Lublin were running out of options. I remember the helplessness in their eyes, a reflection of my own despair. The situation only intensified on January 12th, when Marcelek had to return to the ICU. An attempt to increase his milk intake failed catastrophically—he began choking and vomiting uncontrollably, and we had to perform resuscitation. I held my breath, praying that he would survive another minute, another hour. That day marked yet another nightmarish chapter in our ongoing struggle.
Miraculously, we received the genetic results earlier than expected, but the news was devastating. Marcelek suffers from extremely rare neurological disorders. His tiny body cannot breathe on its own. He now relies on a tracheostomy tube to survive, and soon he will also require a PEG tube for feeding. The seizures continue relentlessly, and conventional treatments offer little relief. Doctors have begun preparing him for home hospice care. From the moment he was born, Marcelek has not spent a single day in our home, and the prognosis remains grim.
Every day is a struggle for him, and every day is a battle for us as his parents. The world we had envisioned for our family—a home filled with laughter, the simple joys of childhood, the security of ordinary life—was replaced by hospital rooms, monitors, alarms, and uncertainty. Life as we knew it ceased to exist. My days are consumed with fear, anxiety, and the constant need to be present for my son, to monitor him, to fight for every breath he takes.
Despite the immense challenges, I refuse to give up. I want to fight with every ounce of strength I have to give my son a chance at life, a chance at even the smallest semblance of normalcy. But to do this, we need help. Genetic diagnostics, ongoing treatments, specialized care, and rehabilitation are extraordinarily expensive. The costs are far beyond what a family can bear alone, yet these interventions are essential for Marcelek to survive and have any hope for improvement.
I have never asked for help in my life, but this is no ordinary circumstance. This is about saving my son. It is about giving him every possible opportunity to live, to grow, to experience even a fraction of the life every child deserves. I cannot do this alone. We need your support—financial, emotional, and spiritual—to continue this fight. Every contribution, no matter how small, brings us closer to the care that Marcelek desperately needs.
Every day is a new challenge. Every seizure, every struggle to breathe, every failed attempt to feed himself, reminds us of how fragile life can be. And yet, amidst the fear and pain, there are moments of hope. A brief smile, a flicker of recognition, the warmth of his hand in mine—these fleeting moments give us the courage to carry on. They remind me that even in the darkest circumstances, a child’s strength can shine through.
Marcelek is more than a patient; he is my son, a little boy whose life has barely begun, yet who has already endured more suffering than most adults could imagine. His courage humbles me every day. Even in the midst of illness and pain, he shows resilience. He teaches me about bravery, about love, about the power of hope. And it is that hope, fragile as it may be, that drives me to keep fighting on his behalf.
We are facing an uphill battle, and the road ahead is long and uncertain. There will be more hospital visits, more treatments, and more challenges. But with your support, we can provide Marcelek with the medical care, therapies, and support he needs. Together, we can give him a fighting chance. Together, we can ensure that he is not alone in this fight.
Please, do not turn away from this plea. Every donation, every shared story, every prayer matters. They are lifelines in a world that has become overwhelmingly dark and uncertain. Marcelek deserves a chance—every day he lives, he deserves our love, our hope, and our unwavering commitment.
I write this not only as a mother asking for help, but as a parent desperate to give her child a chance at life. The path before us is daunting, but I believe in miracles, in human kindness, and in the power of collective support. With your help, we can continue the fight. We can provide the care, attention, and love that Marcelek needs to face each day.
From the bottom of my heart, I thank you for taking the time to read our story. Thank you for every thought, every prayer, every act of generosity. Your support is not just a donation—it is a beacon of hope, a lifeline for my son, and a reminder that even in the darkest times, we are not alone.
Marcelek may have started life with unimaginable challenges, but with your help, he can continue to fight. Together, we can give him a chance at life, a chance to experience love, and a chance to be our little boy—not just a patient in a hospital, but a child with dreams, a family, and a future worth fighting for.
