By Micah Smiley
Mommy to Dante
Double Mutation of the ATM Gene, Gastroparesis, Epilepsy, Hypotonia, Undiagnosed Disease
Born September 2020
Dante came into my life through foster care when he was 11 months old. I had the same hopes and dreams many parents carry. I imagined watching him grow stronger each day, learning to walk and talk, playing outside, and reaching the milestones that define early childhood. I dreamed of giving him a safe, joyful life filled with laughter, love, and opportunities to explore the world around him. I believed that with stability, care, and affection, he would thrive.
However, from the very beginning, I could tell he wasn’t developing typically. By the time he was 16 months old, I knew something more was going on, and I pushed to find a pediatrician who would truly listen to my concerns. Thankfully, that doctor did. Dante was admitted to Children’s Hospital for further testing, and that marked the beginning of his medical journey.
As we began searching for answers, I knew in my heart that something serious was happening, but nothing prepares you to hear that your child’s condition may be rare, progressive, or even unnamed. After genetic testing, we learned that Dante carries a double mutation of the ATM gene. Doctors explained that this mutation can sometimes cause Ataxia Telangiectasia, a devastating disease, but that for Dante, the outcome is still unknown. It may take years to understand what this mutation truly means for him—or whether his condition has even been identified in another child before.
Hearing that news changed everything. My fears shifted from missed milestones to much bigger questions: how his health might decline, what challenges he would face, and whether there were treatments available to help him. The doctors were honest—there is still so much they don’t know, and Dante’s case has puzzled specialists. Their recommendation was to manage each of his symptoms as best as possible while continuing to search for answers.
That search led us to the Undiagnosed Disease Network, where Dante officially became a participant in September 2025. While the fear of the unknown remains, having a team dedicated to uncovering answers has given me both direction and hope.
His complex needs immediately reshaped our daily lives. Over time, those challenges have continued, defining what “normal” looks like for Dante and for our family. He struggles to understand why he cannot do the things other children his age can do, and he requires 24-hour supervision. Much of his daily life is guided by medical needs rather than typical childhood milestones.
For our family, there is ongoing grief for the life we once imagined for Dante. While we celebrate every accomplishment and joyful moment, there is always an awareness of the challenges he faces and the adaptations required for him to thrive. These realities touch every part of our lives—our routines, our emotions, and our understanding of what it means to care for a child with complex medical needs.
In Dante’s younger years, hospital stays were less frequent—often months apart—but they typically lasted for weeks at a time. As he has gotten older, that pattern has changed. Now, hospital admissions are more frequent, sometimes only one to two months apart, and occasionally just weeks apart, though they usually last only a few days.
This rhythm has shaped what “normal” looks like for Dante. While most children see hospitals as unfamiliar or frightening, he refers to it as his “second home.” Even when he isn’t admitted, we are there weekly for appointments, making the hospital a constant presence in his life.
For our family, these hospitalizations are both emotionally and logistically difficult. It’s hard when we can’t all be home together, and my other children often worry about Dante when he is hospitalized. Still, we navigate it with love and flexibility, knowing this is part of his journey.
We first connected with On Angels’ Wings in 2023 for a Journey Session. The experience was incredibly uplifting and easy. We were paired with an amazing photographer who instantly made us feel comfortable, and the photos we received were beautiful. They were the very first professional photos ever taken of my children and me—and to this day, On Angels’ Wings is the only organization that has photographed our family.
Dante is currently considered to be in the “maintenance” stage of medical complexity. Right now, our focus is on managing his symptoms and keeping him as comfortable and supported as possible, rather than pursuing a diagnosis for every individual issue. It’s challenging, but we take life one day at a time. We celebrate small victories, adapt as changes come, and lean into routines and each other for strength.
Dante is so much more than his medical diagnoses. He is joyful, curious, and full of spirit. He lights up every room he enters with his contagious smile and infectious laugh. His resilience inspires everyone who knows him. He loves music, being with his family, and exploring the world in his own way. He finds joy in small moments—a favorite toy, a song, a hug—and reminds us that happiness can exist even in the hardest circumstances.
Dante is full of life, love, and personality. His story is one of courage, perseverance, and light. He reminds everyone around him that every child deserves to be seen, celebrated, and cherished for who they truly are.
Looking ahead, our hope is that Dante continues to live each day as comfortably and joyfully as possible. Over the next year, we hope for stability in his health and continued progress within the scope of his needs. In the next two years, we hope to gain more answers about his rare condition. Over the next five years, our goal is to provide him with opportunities to explore, engage, and experience life fully—while managing his medical complexities.
Above all, we want Dante to feel loved, supported, and celebrated—not just for his medical journey, but for the joy, determination, and spirit he brings into the world.
On Angels’ Wings has made an incredible impact on us. From the beginning, it was clear that OAW is more than an organization—it is a family. Their support has extended far beyond photography, surrounding us with a community that understands, encourages, and walks alongside us. The photos we’ve received are more than images—they are tangible memories of moments we may never get back. They capture our children exactly as they are, and they are treasures we will hold onto forever.
Beyond the photos, the community and ongoing support OAW provides have been life-changing. Being surrounded by families who understand the realities of caring for a medically complex child has brought us connection, reassurance, and hope. Knowing there are ongoing services—journey sessions, gatherings, events, and even grief support—offers comfort and stability.
On Angels’ Wings is important because they do more than take pictures. They give families recognition, connection, and hope during incredibly difficult seasons. For families like ours, their work validates both the struggles and the joy, honors our child’s story, and reminds us that we are not alone.
OAW is a lifeline, offering encouragement, friendship, and reassurance, helping families feel seen and supported—even when life feels overwhelming.
