Influencer Lizzie Kieffer shared her daughter Lily’s diagnosis one year after the 12-month-old died.
“An update on our Lily: I know this is a little long but I just had to say what was on my heart,” Kieffer wrote via Instagram on Saturday, May 16. “I have been wanting to share with you all what we found out about our girl but I just haven’t been able to come on and share and just waited until it felt right to.”
She continued, “Our sweet Lilian Louise passed away on April 23, 2025. 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.”
Kieffer shared that Lily “had a very rare brain tumor called ATRT (Atypical Teratoid Rhabdoid Tumor).” She noted that ATRT is “an extremely rare and aggressive brain tumor,” which typically occurs in “children less than 3 years old and there are fewer than 100 cases diagnosed each year in the states.”
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“Lily’s tumor was located on her brainstem,” Kieffer wrote. “She showed absolutely no signs of this and was even starting to take her first steps just days before. That morning before she passed, I remember feeding her her morning bottle and she kept being distracted by her sister, Mia. And was just giggling away at her ❤️.”
She continued, “They found that Lily had a few other illnesses at that time (all common cold/stomach bug things that kids get). They believe these weren’t the cause but just a concurrent factor.”
Kieffer, who also shares daughters Mia and Isla with husband Matt, wrote that the family is “grateful” for Lily, “who she was and who she continues to BE.” The influencer shared that they are also “grateful God gave her such a beautiful, pain free, LOVED life.”
“She is in complete perfection – wrapped in sweet warmth and bliss in her Creators embrace,” Kieffer concluded. “Her story continues on. And we know God will continue to use Lily to guide us and protect us and share GOOD. She is so good. He is so good. Thank you for everything. Just everything. This community is an absolute blessing. Love you guys 🤍.”
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In a video shared via her Instagram on Saturday, Kieffer reflected on her daughter’s “unexpected” death and noted that the family waited for test results for “months” until they were given a diagnosis in October. Kieffer shared that they think the “stomach bug” Lily had is what “tipped things over the edge” at the time of her death.
“We know that even if we knew about her brain tumor, the likelihood of her surviving would be extremely, extremely low,” she explained while becoming emotional. “We know that based on where it was. Ultimately what happened is it kind of just shut down her system and most likely, what they think, is her illnesses just caused enough inflammation in the brain and everywhere else to just push on the brainstem just right.”
“What we know is that Lily passed in complete peace,” Kieffer continued. “And we are so thankful that — we would give anything to have her back, I think that goes without speaking, anybody knows that right — but we know that God has a plan for her. He had a time on her life here on Earth. And we know that she is in complete peace where she is at. She did not have to endure any sort of pain, any sort of things that you go through when you have this kind of diagnosis. It is not an easy journey.”
Kieffer noted that Lily is their “angel” and has “shown up” in different ways since her death.
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“It is undeniable that she is still with us for sure,” Kieffer said, sharing that her daughter will “always be around.”
Kieffer concluded by sharing that she wanted to share Lily’s diagnosis to make the awareness “known,” explaining that it was not genetic and a “random mutation” that happened when she was “formed in the womb.”
“We are just trying to find the good and allowing the days that are so hard to be hard,” Kieffer said. “But, always looking for that hope and the peace, which truly is undescribable.”
