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Doctors explained that CDK19 is a neurodevelopmental gene mutation, meaning it affects the brain and nervous system. They told me that eventually it would likely lead to grand mal seizures. They painted a picture of a future full of limitations—that she might never walk, never run, and never have the independence other children enjoy. But…

Throughout each step of his journey so far and all he has already overcome, Leon has always been infectiously happy. He hasn’t always been strong enough to laugh, but from the moment he learned he could do it, his laughter has been filling rooms and hearts.

As soon as Theo and his brother came to live with us, we began working closely with a pediatric GI team, determined to find answers for our boy. Within a few months, we learned that Theo had Hirschsprung’s disease, a congenital birth defect that should have been diagnosed within the first six weeks of life.…

Cole is full of joy, love, and wonder. He truly takes in the world around him and approaches life with incredible grit. Every milestone he has achieved has required hard work, and he meets each challenge with joy. Everyone who meets him is drawn to his positive, fun, and silly personality.

Acknowledging what has happened is such a significant part of processing trauma. What OAW provides is a tangible way to acknowledge both the loss and the love. Giving families something real to hold onto—especially when everything else feels shattered—is something that cannot be replaced.

Being given the side-eye by Rachel was worn as a badge of honor in the NICU. Even nurses filling shifts from other areas had already heard about her. She seldom cried—even in the worst circumstances. Her smile could melt anyone’s heart. She loved being the center of attention, but only at her discretion. She will…

We continue to keep Elizabeth’s memory alive every day. The pictures from the hospital hang on our wall. Every time we see a rainbow, we say that’s Elizabeth looking down on us. We talk about her often—when we try something new or reach a milestone, we include her in the conversation.

We now live day to day, never knowing when God may call our son home. Watching him slowly decline has been devastating for our entire family—mom, dad, and all three of his brothers. And unfortunately, there is no cure for this disease.

Dante 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.

Danielle’s condition impacts every part of her life. She likely has a reduced life expectancy, and I know I’ll miss milestones most parents expect, like her going to college or getting married. My goal is simply to help her live as healthy a life as possible.