Axell & Elliott
Two Brothers, Two Journeys
When we first learned we were pregnant with Axell, our hearts were full. He was our first baby, the child we had dreamed of for years. Like most parents, we walked into our 20-week anatomy scan imagining nothing but joy. Every test had been perfect up to that point—why would we expect anything different? But that day, everything changed. The doctor’s words—“Spina Bifida”—echoed through the room. It felt like the air was pulled from my chest, as though I were watching my life from outside my body. Why us? I wondered. Surrounded by big, healthy families, I couldn’t help but question. But deep down, we knew one thing with certainty: this child was ours, given to us for a reason.
Axell’s fight began before he was even born. At just 25 weeks, surgeons performed an in utero fetoscopic fetal repair in Houston, Texas. It meant months of hospitalization, endless tests, and fears we could barely put into words. But it also meant a chance to give him the best start we could. He arrived on July 29, 2022, tiny but mighty at 4 pounds. His NICU stay was short compared to what we had braced ourselves for. From the start, Axell showed us resilience beyond his years. At five months, he endured his first brain surgery for hydrocephalus. By seven months, a VP shunt was placed, and three years later, it still protects him today. Later, we learned he also has Diamond-Blackfan Anemia, a rare condition he inherited from me—something I never knew until him. Yet, despite every diagnosis, Axell runs, laughs, and plays fully unassisted. Doctors marvel at him. To the world, he looks like any other boy—but we know the courage behind every step he takes.
Just when we thought our hearts couldn’t be stretched further, Elliott came along—our surprise baby, only 18 months after Axell. When the diagnosis came again—Spina Bifida, bilateral clubfoot, and worsening hydrocephalus—I fell to the floor in tears. Twice? It felt impossible. Elliott was born on January 12, 2024, at 6 pounds, and by seven hours old he had already endured major spine surgery. Within two weeks, he received his VP shunt. By 18 months, he had already undergone seven surgeries. Genetic testing confirmed he also carries Diamond-Blackfan Anemia, and later he was diagnosed with polymicrogyria, a brain abnormality that caused a terrifying seizure and hospital stay. Yet, none of this defines him. Elliott may not yet walk, but he scoots, army crawls, and wheels himself in his tiny chair with fierce determination. He may not yet speak many words, but his signing is clear and full of expression. His joy radiates through his smile, his curiosity, and his ability to love fully despite the hurdles.
Life with Axell and Elliott is not easy. Between appointments, therapies, and hospital stays, our days are often overflowing. But so are our hearts. These two little boys—our superheroes—remind us daily that strength doesn’t come from the absence of struggle. It comes from rising above it.
They have shown us what it means to be resilient, what it means to love without limits, and what it means to live fully, even when life writes a harder story. Their laughter fills our home. Their strength inspires everyone who meets them.We never asked for this journey, but now we can’t imagine life any other way. Our boys are proof that diagnoses do not define destiny. They are living, breathing reminders that joy can coexist with challenges, and that sometimes the bravest warriors come in the smallest bodies.
