Before our son was born, my husband and I had already decided on the perfect name for him. Little did we know how much our baby would embody the courage and strength behind that name. We named him Leo.
What started as a normal, almost uneventful pregnancy quickly took an unexpected turn. Leo arrived three weeks early, on February 22, 2016. In those first moments, he seemed perfect—breathing easily, his tiny heart beating strong. But the sense of calm didn’t last. Soon, he struggled to feed and maintain his body temperature. The doctors reassured us it was probably just because he was a bit premature. “Maybe your dates are off,” they suggested. But my husband and I knew our calculations were correct. Deep down, we felt something was wrong.
Within 24 hours, we noticed an unusual tremor in Leo. Again, the doctors insisted we were just anxious new parents. A few days later, we were discharged, yet unease weighed heavily on our hearts. As we packed to leave, a nurse pulled me aside. “If this were my child, I’d take him straight to the children’s hospital,” she said. “Something isn’t right.”
We did exactly that. Our lives changed in an instant. At the ER of OU Children’s Hospital, Leo’s temperature spiked from 98.6 to 102 degrees in just minutes. Nurses were concerned and admitted us immediately. The next weeks blurred together—tests, questions, more questions, sleepless nights. Doctors repeatedly asked about my pregnancy. Had I been sick? Were the dates correct? Yes, yes, yes.
Finally, an MRI was scheduled to examine Leo’s brain. I remember that day more vividly than the day he was born. Every detail feels etched into my memory. When the results came back, a team of doctors and students filled the room. The attending physician, just a few years older than me and visibly pregnant, sat down and began to cry. She explained that the MRI showed a significant brain bleed and decreased white matter. “It could be nothing,” she whispered, trying to offer hope. But the truth was clear to all of us.
The months that followed were relentless. Specialists, tests, sleepless nights, and a baby who couldn’t sleep or be comforted. Leo’s cries were gut-wrenching; he was in pain we couldn’t explain. He was diagnosed with GERD, diabetes insipidus, and failure to thrive. By six months, he had stopped eating entirely, requiring immediate hospitalization. A swallow study revealed he had lost the ability to safely swallow; every bite and sip threatened his lungs. Surgeons placed a g-tube so he could receive nutrition directly into his stomach.
During this hospitalization, we agreed to whole genome sequencing for Leo and us, hoping to uncover answers. The geneticist cautioned, “There’s only about a 60% chance we’ll get a diagnosis, so don’t get your hopes up.” Four agonizing months passed before the call came.
The next day, we sat in a small hospital room with the geneticists. Their words hit like a tidal wave. Leo had Aicardi-Goutieres Syndrome, an extremely rare genetic disorder with just 400 cases worldwide. Early onset, they explained, meant his life expectancy would likely not exceed ten years. The room spun, and while most parents might have collapsed in tears, I laughed. It felt absurd, surreal—how could this happen to us? But once we left the hospital, the grief came crashing down. Why us? Why Leo?
They say special children are given to special people. That isn’t true. Special children are given to ordinary, everyday people like us—people who never imagined their lives would change so completely. But Leo has taught us more about courage, joy, and resilience than we could have ever imagined.
Today, Leo is almost four years old. He has defied expectations and proven that joy and life are not measured by milestones alone. While he cannot walk or sit independently, he embraces life fully. From a young age, we committed to valuing quality of life over quantity—ensuring he experiences the world just like any other child.
Leo loves to travel and spend time outdoors. He helps with chores, especially feeding the horses. We include him in everything, from pool days to Disney trips, where his favorite ride is the spinning teacups. His laughter—once uncertain—is now constant, especially when we jump and bounce with him. Every giggle is a gift, a reminder that life’s joy comes in unexpected forms.
Living with Leo has taught us countless lessons, but most of all, it has taught us never to give up and never to give in. He has shown us the true meaning of courage, and every day with him is a celebration of love, life, and resilience.
