Lizzie Kieffer Opens Up About Her Late Daughter Lily’s Diagnosis After Losing Her at Just One Year Old
Influencer Lizzie Kieffer Reveals Daughter’s Tragic Diagnosis One Year After Her Death
Influencer Lizzie Kieffer has publicly shared the heartbreaking diagnosis of her late daughter, Lily, one year after the child passed away unexpectedly at just over a year old. Kieffer announced the news on Instagram on May 16, expressing her difficult journey in coming to terms with these revelations.
“Our sweet Lilian Louise passed away on April 23, 2025,” Kieffer wrote. “She was 1 year and 10 days old. It was completely unexpected. After several months of testing, we finally were given the report last October.”
In her post, Kieffer disclosed that Lily had been diagnosed with Atypical Teratoid Rhabdoid Tumor (ATRT), a rare and aggressive brain tumor primarily seen in children under three years old, with fewer than 100 cases diagnosed annually in the United States. “Lily’s tumor was located on her brainstem,” she explained. “She showed absolutely no signs of this and was even starting to take her first steps just days before.”
Kieffer recounted a poignant memory, recalling the morning of Lily’s death when her daughter was happily distracted by her sister, Mia. “That morning… she kept being distracted by her sister and was just giggling away at her,” Kieffer said.
The diagnosis revealed that, in addition to the tumor, Lily had several common childhood illnesses at the time of her passing, which Kieffer emphasized were not believed to be the cause of her death but rather concurrent factors.
Grieving yet grateful, Kieffer shared her thoughts on her family’s enduring love for Lily. “We are grateful for who she was and who she continues to BE. We are also grateful God gave her such a beautiful, pain-free, LOVED life.”
In a subsequent video, Kieffer spoke about the months of uncertainty leading up to Lily’s diagnosis, reflecting on the toll it took on the family. She noted that the stomach bug Lily had at the time may have precipitated a systemic failure linked to the tumor. “What we know is that Lily passed in complete peace,” Kieffer expressed, adding that even if they had known about the tumor, the odds of survival would have been slim given its location.
Kieffer acknowledged the profound sorrow of losing Lily but reaffirmed her belief in a higher purpose. “We know that God has a plan for her… She is in complete peace where she is at,” she said.
She also stated that Lily continues to be present in their lives, describing her as their angel who "has shown up in different ways since her death." Kieffer concluded by emphasizing the need for awareness of ATRT, clarifying that it was not genetic but rather a random mutation that occurred during Lily’s development in the womb.
In her poignant message, Kieffer seeks to find solace even amid adversity, stating, “We are just trying to find the good and allowing the days that are hard to be hard.”
