Luke’s story begins long before diagnoses, hospitals, or specialists. It begins with a family who was excited, tired, and ready to welcome a little boy into the world. When he was born on August 23rd, 2021, everything felt like it was supposed to. He was beautiful, quiet, curious, and for the first six months of his life, he hit every milestone right on time. He smiled, rolled, babbled, connected, and we allowed ourselves to breathe and believe he was growing just like any other baby. The only thing that ever made us pause was his vision. His eyes were off-axis, almost like they were fighting each other to see the world straight. We mentioned it, we asked questions, but the answers were always the same: “He will grow out of it.” We didn’t know then that it was the first sign of something deeper.

Around six months, life started to shift. Not in loud or dramatic ways. It changed in quiet, unsettling moments. Little things started slipping. Responses weren’t the same. Progress slowed. Certain moments felt “off” in ways we couldn’t put into words. Slowly, piece by piece, that gut feeling every parent fears began to grow. Then came the moments that change you forever. The moments where Luke’s body did things it shouldn’t. The moments where he went still or stiff or blank. The moments where we held our breath and prayed it wasn’t what it looked like. The moments where Annabella looked at her baby brother with confusion and concern, knowing something wasn’t right even though she was too young to understand the weight of it.

From that point on, everything accelerated.

Our family became regulars in the medical world. Not visitors. Regulars.

We cycled through eye specialists, neurologists, developmental pediatricians, geneticists, therapists, feeding teams, and surgeons. We held Luke through EEGs where he was covered in electrodes, confused and crying while machines monitored his brain activity. We watched his first surgery, eye surgery just a few months after his first birthday, terrified and powerless as anesthesia took him under. We sat through MRIs, scans, blood draws, needles, sedation, and the kind of waiting room purgatory that drains every part of you. Nurses recognized him from previous procedures. Doctors asked questions we didn’t always know how to answer. Every day, we kept showing up because that is what you do for your child.

Then came the diagnosis. A GABRA1-related disorder. A mutation so rare that parents become the experts because most professionals can only give general explanations. A disorder that affects development, seizures, feeding, communication, learning, and neurological function in ways no one can fully predict. The kind of diagnosis you never fully “move on” from because it shapes every day that follows.

And while we were navigating this medical maze for Luke, life continued to hit us from every direction.

A tornado destroyed our home. Insurance battles dragged on for months.  Our family bounced between uncertainty and survival mode. Our three-year-old’s identity was stolen. Finances tightened.
Cars broke down. Stress climbed to levels no family should endure. We worked, parented, supported our community, and tried to rebuild our lives while still trying to give our kids the stability they deserved.

Yet somehow, through every storm both literal and emotional, Luke kept fighting.  He fought through the seizures. He fought through the delays. He fought through feeding challenges, therapy sessions, appointments, needles, confusion, sensory overload, frustration, and exhaustion. He fought through fear, pain, setbacks, and nights that felt endless.

And he still woke up with love in his eyes.  He still laughed.  He still cuddled.  He still trusted.  He still brought joy into every room he entered.

Gina held our family together with strength most people will never understand.   Annabella became the kind of big sister every child deserves, patient and protective and full of heart.
I kept showing up every single day, even when I felt empty, because my kids needed me and because Luke deserved a father who would fight for him no matter what.

Luke’s journey is not a tragedy. It is not something to pity. It is not a list of symptoms.  It is a story of resilience.  A story of love.  A story of a little boy who has survived more in a few short years than many people do in a lifetime, yet still manages to smile.  And here is the part that matters most.  Luke is still writing his story. He is learning. He is growing. He is making progress in his own way and at his own pace. Every step he takes, no matter how small, is a victory worth celebrating. 

Our journey is far from over, but we have not lost hope. Not once. Not even in our darkest moments.

Luke is proof that even in the hardest seasons, there is still light, still laughter, still love, and still a future worth fighting for.

And that future is exactly what we are fighting for every single day.