Callie was born on December 22, 2024, and from the moment she entered the world, she showed us what true strength and courage looked like. Just days later, we celebrated our first Christmas together as a family of four. We had no idea how much our lives were about to change.
On December 27, we brought Callie to the emergency room after she became unusually lethargic. What followed was a four-week stay in the PICU at Stony Brook Medicine Children’s Hospital, where Callie faced multiple strokes and brain bleeds that left doctors searching for answers. One doctor even called her an “enigma.”
Weeks later, genetic testing revealed that Callie had an extremely rare mutation in the COL4A1 gene. Because so little was known about how her particular mutation would affect her, we were told that no one could predict exactly what her future would look like. We were simply told, “Callie will write her own story.”
And she did.
After finally coming home, Callie began intensive therapies and continued to surprise us with her strength and determination. She worked so hard, celebrated every little bit of progress, and brought an incredible amount of joy to everyone around her. Her big brother, Rowan, was especially important to her. They adored each other, and Rowan loved being by her side, cheering her on during therapy and finding little ways to make her smile. Some of Callie’s biggest smiles were reserved just for him, and the love they shared as brother and sister was one of the most beautiful parts of her life.
In the months that followed, Callie faced more challenges, including infantile spasms and additional hospital stays. Through all of it, she continued to show us who she was: strong, determined, joyful, and deeply loved.
In September 2025, after another hospitalization, Callie suffered three major seizures that caused irreversible brain damage. We were faced with the unimaginable decision to shift our focus from fighting to making sure our baby girl was comfortable and surrounded by love. With the incredible support of the Stony Brook Pediatric Palliative Care team, we were able to spend her final days holding her close, filling her with love, and making sure she was never alone.
Callie passed away peacefully on September 27, 2025, at just nine months old.
But Callie's story did not end there.
Callie loved love. She loved being held, being surrounded by the people who adored her, and being close to her family. And she gave that love right back to us in ways we will carry forever.
The Callie Loves Love 5K is our way of keeping that love moving forward.
Every runner, walker, donation, shirt, and act of support helps us continue Callie's legacy while supporting other children and families who are facing rare genetic conditions and unimaginable medical journeys.
Thank you for celebrating Callie with us, for remembering her, and for helping us continue the story she started.
Run for Callie. Run for love.