Madelyn James Community: It is with a heavy heart that I share tragic news of the passing of one of our Madelyn James children. Nico, was a beacon of hope whose story we were preparing to share with you. Tragically, he left us before we could tell his courageous story.
This pain is all too familiar to us.
This is the harsh reality of childhood illnesses and cancer.
In our reflections on how best to honor Nico, and with the heartfelt consent of his parents, Claudia and Pablo, we are privileged to share his story with you.
When Claudia and Pablo held their son Nico for the first time, they felt the weight of a dream fulfilled. After years of fertility treatments and prayers, their baby boy arrived at 36 weeks—tiny but strong, and healthy enough to skip the NICU. The Bolivian couple, who had once been high school sweethearts, had built a life together in Idaho and Virginia, and Nico was the long-awaited heart of their family.
The early days were filled with the usual joys and sleepless nights of new parenthood. Nico’s sleepy smiles and curious eyes brought warmth to their home. But at just three months old, everything changed. What was first dismissed as a virus became a relentless fever. Claudia's motherly instinct told her something was wrong. She rushed from urgent care to the pediatrician, unable to find peace. It wasn’t until one perceptive doctor noticed Nico’s pale complexion and ran bloodwork that they heard the devastating words:
“Go to the emergency room. Now.”
Nico’s hemoglobin was at six—a dangerously low level. Within hours, their lives were upended. It wasn’t a virus. They thought it was leukemia.
The next 19 days at INOVA Fairfax Hospital were a blur of tests, biopsies, and terrifying uncertainty. Claudia and Pablo clung to each other, hoping against hope.
Nico was eventually diagnosed with HLH (hemophagocytic lymphohistiocytosis)—an extremely rare disorder, occurring in just 1 in 50 million people. The doctors told them it was so rare they often didn’t know until it was too late.
And, Nico was a fighter. Through chemotherapy, steroids, and infusions, he showed remarkable strength. In August, he was admitted to Children’s National in DC for a bone marrow transplant. On October 9th, he underwent the procedure that his family prayed would give him a future. For two long months, they lived in the hospital, watching their brave boy endure with more strength than anyone could imagine.
When they were finally discharged at the end of October, hope flickered again. Nico worked tirelessly in PT and OT, trying to regain strength after so much time spent in bed. His tiny hands gripped the edge of the therapy mat, determined to keep up with other children, despite the setback of missed milestones.
Yet the fight was never just about the illness—it was about survival as a family. Pablo struggled to find steady work. Claudia, who worked for a financing company, was grateful for her health insurance, which covered most of the staggering medical bills. Still, the financial strain and emotional weight were immense. They juggled treatments and bills, hope and fear, holding on tightly to the only thing that mattered—their baby boy.
And then, just days after his first birthday, Nico’s body could fight no longer. On March 20, 2025, their sweet boy took his last breath.
He was one year old—an entire lifetime wrapped in a single year.
Their grief is unspeakable. Their home is now too quiet. There are no words to describe the heartbreak of having to build a life after losing your baby. No words for the small shoes left by the door. No words for the empty crib.
Nico's short life touched so many. His parents’ love and devotion were unwavering. Their story—one of hope, heartbreak, and fierce love—reminds Dan and I of our sweet Madelyn James. Like Maddy, Nico fought with unimaginable courage. Like Maddy, his story will carry on through the lives of others.
As Claudia and Pablo face this unfathomable loss, we hold them in our hearts. We will stand by them as they grieve, as they heal, and as they find a way to honor their sweet boy’s memory.
We will be honoring Nico's life at our Bow Bash in DC and we will continue to say his name with love. We will also be sharing how you can support Claudia, Pablo and their entire family during this time of anguish and greif.
Nico, you will always be loved. You will always be remembered. You are family. đź’™