Our precious daughter, Callie Noelle Alt, was born on December 22, 2024, and from the moment she entered this world, she showed us what true strength and courage look like. Just days later, we celebrated a beautiful Christmas together as a family of four — a moment when life felt complete. But on December 27, 2024, everything changed. We brought Callie to the emergency room after she became unusually lethargic, not knowing that this would be the beginning of her long and courageous fight.

For her first six weeks in the PICU at Stony Brook Medicine Children's Hospital, Callie faced several strokes and brain bleeds bravely, facing challenges that no one could explain. One doctor even called her an enigma. It wasn’t until weeks later that we learned Callie had an extremely rare genetic mutation called COL4A1 — something that explained the challenges she was facing but also opened a world of uncertainty. The doctors told us that, because her mutation is so rare, her future would be impossible to predict. They also said, “Callie will write her own story,” and here it is.

When we were finally able to bring Callie home, she began intensive therapies and made incredible progress. Her determination and spirit brought so much hope to our family. She especially lit up whenever her big brother, Rowan, was near. He was her little helper during therapy sessions, cheering her on, and she always smiled for him in a way she did for no one else. But toward the end of July, she developed infantile spasms — a rare and aggressive type of seizure that deeply affected her progress. Despite the challenges, the trials of different steroids, and more hospital stays, Callie continued to fight and continued to bring joy to everyone around her.

In early September, Callie was again taken to Stony Brook Hospital due to feeding issues. After two weeks in the hospital, she suffered three major seizures that caused serious and irreversible damage. As parents, we understood this as a heartbreaking sign that our 9-month-old baby girl was tired of fighting. We worked with such a caring, dedicated palliative care team to make sure Callie’s final days were filled with love, warmth, and comfort. We held her close, surrounded her with all the gentleness she deserved, and made sure she never felt alone for even a moment.

Callie passed away on September 27, 2025 — cradled in love, and finally at peace.

To honor Callie’s memory and the love she had for being held and cherished, we are organizing the Callie Loves Love 5k. This event is not only a tribute to the love she gave and received, but also a celebration of her first birthday on December 22 — a day that will forever hold a special place in our hearts. The 5k is a way for our community to come together in her name, continuing the story she began and leaving a legacy that we are so proud of. All donations will be split between The Gould Syndrome Foundation, to support research and provide answers for families with children diagnosed with COL4A1, and the Stony Brook Children's Hospital Pediatric Palliative Care department, whose compassionate team helped us navigate the most difficult, unimaginable moments. Your support will honor Callie’s legacy and make a meaningful difference for children and families in need.