Brennan Brackbill still remembers the moment he first held his daughter, Victoria. She was born on July 30, 2014, after a long labor that ended in a C-section. Because his wife Lesa’s, arms were numb from the epidural, Brennan was asked to step in for the first skin-to-skin. He eagerly agreed, holding the tiny newborn against his bare chest for over an hour. “She was so calm the entire time,” he recalled later. “I sang to her, talked to her, and right then I knew — if we ever had more kids, I would do skin-to-skin again.” It was a simple act but built an unshakable bond between father and daughter.
That bond would soon be tested in ways Brennan and Lesa could never have imagined. Five months later, in January 2015, their cheerful baby girl suddenly changed. Tori stopped smiling and laughing. She seemed to be in pain. Within weeks, doctors delivered the news no parent ever wants to hear: Tori had Krabbe Leukodystrophy, a rare genetic disease that is always fatal if not treated at birth. The words “terminal diagnosis” felt like a punch to the chest. Their baby had been given a life expectancy of two years or less.
“It was devastating,” Brennan shared. “A six-month-old should never be described as dying. And to learn that this could have been caught at birth with newborn screening — that was even harder to accept.” Faced with grief, the Brackbills made a choice. They could drown in sadness or fill whatever time they had with joy. They chose joy. Together, they created a bucket list for their daughter: 50 experiences, ranging from simple pleasures to big adventures. They documented each moment on Lesa’s blog and a Facebook page, followed by thousands who cheered Tori on. Medical equipment came along for the ride, but it never stopped the family from making memories.
“She brought us so much joy,” Brennan said. “Her life, though short, changed our perspective completely.” On March 27, 2016, Tori passed away at just 20 months old. Her parents were heartbroken but grounded in their decision to celebrate her life rather than measure it only by her illness. As Lesa once said, “The depth of my love for my daughter is not measured by the number of tears I cry, but by the life I choose to live in her absence.”
The couple never forgot that first skin-to-skin moment with Tori. So when Brennan and Lesa learned in 2021 that they were expecting twins — healthy, identical boys with no trace of Krabbe — Brennan knew precisely what he wanted to do in the delivery room. At first, the staff seemed hesitant when he requested skin-to-skin in the operating room. But Brennan, gentle yet determined, explained why it mattered. “Because of our daughter, this is so important to us,” he told them. “I’ll make it work — big wingspan, no problem. I’ll go shirtless under the gown if I need to.”
The doctors agreed. Isaiah, the firstborn twin, was placed against Brennan’s chest. He came out wailing, but as soon as Brennan held him close and spoke softly, the newborn calmed. Brennan scooted closer to Lesa so she could see her baby, too. Minutes later, Caleb had his turn — the same tears, the same calming magic once his father pulled him near.“Both boys settled right down,” Brennan said. “It meant the world to us. Especially because we can’t hold Tori anymore.”
The staff in the OR — more than twenty people — told Brennan it was one of the sweetest things they had ever witnessed. But for the Brackbills, it was more than sweet. It was healing. Since losing Tori, they’ve made it their mission to advocate for newborn screening laws. Only a handful of U.S. states test for Krabbe at birth, even though early detection can save lives. “Your zip code shouldn’t determine life or death,” Brennan explained. “We want all babies to be screened equally.”
Now, with Isaiah and Caleb in their arms, the Brackbills live daily with a renewed sense of gratitude. Tori’s absence will always be felt, but her legacy is present in every hug, every laugh, every skin-to-skin moment with her brothers. Her short life taught them the most enduring lesson: joy is a choice, and love always multiplies.
