Just moments away from welcoming her son, William, into the world, Katelynn Smoot's life had felt like a picture-perfect dream. She and her husband, Tyler, were raising their 18-month-old daughter, Lilah, in North Carolina, cherishing every moment of her singing and dancing along to The Wiggles or Taylor Swift. Expanding their family seemed like a dream come true.
But on February 24th, that dream was shattered abruptly. As Katelynn was eight centimeters dilated, a doctor entered the delivery room and said, "I'm sorry to tell you, but Lilah is in the ER." Still in her hospital bed, Katelynn learned that Lilah had suffered a seizure at home and was rushed to the emergency room. A scan revealed a mass on her brain. While the tumor wasn't causing pressure or swelling, meaning surgery could safely wait until the following week, the fear hit immediately.
That same day, Lilah was transferred to a children's hospital for an MRI. Before leaving, she was allowed a brief visit with her parents. The MRI confirmed their worst fears: the mass was a stage 4 tumor - a very rare and aggressive ATRT (atypical teratoid rhabdoid tumor).
"At first, we tried to stay hopeful," Katelynn tells PEOPLE exclusively. "We thought maybe she'd have surgery and everything would be fine." On March 3rd, Lilah underwent brain surgery, and doctors successfully removed the entire tumor. But later that week, the full diagnosis arrived over the phone - ATRT - a tumor with a 100% mortality rate if left untreated. "We cried for three days straight," Katelynn says.
Surrounded by their family, the couple leaned on their support system, but fear lingered. "In the quiet moments, just the two of us, I remember looking at my husband and saying, 'I just don't want her to die.'"
Doctors walked them through the treatment plan for ATRT - essentially one protocol: two rounds of induction chemotherapy, three rounds of high-dose chemo with stem cell rescue, and six weeks of proton radiation. Their oncologist consulted nationwide specialists to confirm it was the best course. "With Lilah's cancer, if you don't treat it, there's a 100% chance she's going to die," Katelynn says. "Because it's so rare, there aren't many treatment options - there's really only one protocol that's been used for the past 25 years."
Both Katelynn and Tyler stepped away from work to care for Lilah full-time while adjusting to life with a newborn. Lilah first began treatment at Brenner Children's Hospital in Winston-Salem before transferring to Duke Children's Hospital in Durham for most of her chemotherapy. When it was time for proton radiation - which Duke does not offer - the family temporarily moved to Philadelphia so she could continue care at the Children's Hospital of Philadelphia.
The initial phases were indeed the most arduous. "She experienced a multitude of side effects," Katelynn recalls with a note of tenderness. "But where we stand now, honestly, we're just overjoyed. People may not comprehend how one can find happiness amidst such a trying, somber time, but she's here, alive. She's with us, acting normally, and I'm determined to create as many cherished memories as I can with her."
Through every step of the journey, Lilah's spirit has remained unbroken. "She's always been so cheerful—even as a baby, she had the best temperament," Katelynn marvels. "Everyone referred to her as a 'trick baby' because she made everything look effortless...she still desires to approach other children to play or say hello to people," her mother shares with a smile. "She hasn't lost that spark."
As a means of processing the whirlwind of emotions, Katelynn embarked on documenting their story online through TikTok and Instagram. Initially, she took a three-week pause, uncertain whether to share their tale publicly. But she soon realized that posting served as a coping mechanism to process her feelings.
An unexpected turn occurred when her posts resonated with other parents who messaged her, expressing how her updates helped them feel less isolated. This connection transformed everything. "That's when I realized I wasn't just sharing for myself—I was doing it to raise awareness," she muses. "Pediatric cancer is very real. It's not as rare as people think. And brain tumors have now surpassed leukemia as the leading cause of cancer-related deaths in children."
"Everyone is just one diagnosis away from their life changing forever," she adds with a touch of gravity. "For us, it happened in an instant—one day she was fine, and the next day, she wasn't."
An unexpected bright spot emerged when Lilah discovered Swift's new album, Life of a Showgirl. One day while Katelynn was playing the record, Lilah perked up and exclaimed, "Mom, that's Taylor Swift." Katelynn pulled up the "Fortnight" music video—and Lilah danced with glee.
Of course, Katelynn recorded the adorable moment. Mid-dance, Lilah, now 2 years old, looked at the screen and declared, "That's my friend." "I didn't even realize what she said at first," Katelynn laughs. "I asked, 'That's your friend?' and she said, 'Yeah.' And honestly, it feels like they really are."
When she shared the clip on TikTok, it quickly went viral—and commenters tagged Swift. "I joked to my husband, 'People really think Taylor's going to see this,'" she recalls. "He told me, 'You never know.' But I had no real hopes she actually would."
A few days later, she received the news from Tyler while he was at the airport: "Taylor Swift just donated $100,000 to us." "At first, I thought he was joking," Katelynn says with a hint of disbelief. "For about 30 minutes, we questioned if it was real. But then we saw it come through on the backend of GoFundMe, along with a message that said, 'Sending you the biggest hug to my friend Lilah.' That's when I knew Taylor really saw the video—and she meant it."
The moment still feels surreal. "Knowing that she saw our video makes me so happy," Katelynn says. "The donation is incredible—it helps us so much—but the fact that she took the time to watch, to care, to send that message...it means everything."
Lilah may not fully understand fundraising but knows about friendship. When they filmed a thank-you message, she saw Taylor on the iPad and once again declared, "That is my friend." "I told her, 'Yes, baby—Taylor Swift is your friend,'" Katelynn says with a smile. "That's just how she sees it. And honestly, I love that."
Katelynn adds that support has only grown since Swift's contribution. "Her donation started this movement, and the Swifties took it and ran," the mom says with admiration. "They've almost doubled her donation now. I feel like I can't say thank you enough."
"I'm so grateful that more awareness is being spread about pediatric cancer and ATRT," she adds with conviction. "Even if someone didn't donate—just seeing our story makes us feel seen." The family hasn't heard directly from Swift beyond the donation—and they don't expect to. "She's a very busy woman, and what she did was more than enough," Katelynn says with respect. "I just hope she knows how grateful we are. It felt like she gave us the biggest hug."
