We believe that parents are the best advocates for their children—no one knows them better. But even the strongest advocates can feel overwhelmed by the weight of a confusing and fragmented medical system, medical complexity, and unexpected diagnoses. These children are already showing incredible strength, and they deserve a system that supports them. Parents strive to leave no stone left unturned when it comes to their child’s care, and oftentimes, they don’t even have the stone in their grasp to turn over.

Families shouldn’t have to fight for care or exhaust themselves trying to track down the right resources while facing some of the most difficult moments of their lives—navigating the transition from the NICU to home or the early days of a rare disease diagnosis.

At The Dax Blattner Foundation, our mission is to bridge the gap and place that special stone in families’ hands—so parents can move forward with strength, confidence, and support.

Founded on a genuine understanding of the challenges families face, our work grows from a deep commitment to compassion, clarity, and care, ensuring every family feels supported, understood, and empowered as they navigate their child’s medical journey.

Above all, through Dax’s legacy, we hope to inspire others to live with gratitude, even in the midst of uncertainty.

The Dax Blattner Foundation exists to connect NICU families and families of children in the rare disease community with the right resources at the right time.

The dragonfly in our logo is our way of honoring Dax. Dax was born with a rare genetic disorder: Pontocerebellar Hypoplasia Type 8. A series of tests were completed to determine his diagnosis, and the neurological findings in his MRI showed a “dragonfly-like” cerebellum.

Much like Dax, dragonflies symbolize self-realization, understanding the deeper meaning of life, taking the time to reconnect with our strength and happiness, overcoming times of hardship, and living life to the fullest.

Dax gained his angel wings on November 3, 2024. He taught us the purest meaning of unconditional love; we learned a love without conditions or expectations—a love that simply delights in the precious person God created him to be.

Dax taught us how to live in the moment, and how to find joy and gratitude in the little things [which are actually the big things, when you really think about it]. We would find ourselves always saying: There are sparks of joy in each day, even if we have to search a little harder to find it. It’s all about perspective; we have so much to be grateful for each and every day. Through Dax, we discovered the beauty in simplicity: the warmth of the sun, the gentle touch of a cool breeze, and the soothing sound of waves rolling in at the beach.

In our logo, you’ll see a dragonfly with soft hues of yellow and blue—a reflection of some of the things Dax enjoyed most. He had a very special connection with Mother Nature; he loved being outside beneath a bright blue sky, feeling the sunshine on his skin, and a cool breeze blowing through his hair. The beach was one of his favorite places to be, where the sound of the waves brought him joy, comfort, and happiness.

We learned from Dax that the measure of life is not in years but in the love we give and receive. Through our foundation, we honor Dax’s legacy by helping others live with intention, love, and gratitude. We hope Dax’s story reminds others that even during life’s most difficult moments, it’s possible to find light and strength.