If you met 2-year-old Lilah today, you’d probably notice her bright blue eyes, her infectious giggle, and her determination to climb on just about anything. She loves to dance, laugh, and sip coffee (yes, really!).
What you might not see is the strength it takes for this little girl to face one of the rarest and most aggressive childhood brain cancers — ATRT (Atypical Teratoid Rhabdoid Tumor) — and the fight she’s in every single day.
A Joyous Day Turned Upside Down
On February 24, 2025, while Lilah’s mom, Katelynn, was in labor with her baby brother, William, their world changed in an instant.
While staying with her grandparents, Lilah had a sudden seizure and was rushed to the emergency room. A CT scan revealed a mass in her brain. Within days, she was in surgery at Brenner Children’s Hospital, where doctors successfully removed the tumor.
Then came the diagnosis: Atypical Teratoid Rhabdoid Tumor — or ATRT.
Fewer than 100 children in the U.S. are diagnosed with ATRT each year. It grows rapidly, primarily affecting children under 3, and even with today’s best treatments, the five-year survival rate hovers around 40%.
For the Smoot family, that number is a stark reminder of how urgently cures are needed.
Fighting Forward
Lilah’s treatment began almost immediately. She’s endured five rounds of chemotherapy, three of which were so strong that she needed her own stem cells to help her body recover. Each hospital stay lasted weeks, leaving only short breaks at home before returning for the next round.
“This child cannot be stopped,” says Katelynn. “You can’t help but love her. Even on her toughest days, she still smiles.”
Lilah recently completed her six-week proton radiation treatment on November 11th, a crucial step in her journey. Just a few days later, on November 17th, she had her central line removed. The family is now back home in North Carolina, and Lilah is scheduled for follow-up scans on December 17th.
The Harsh Reality of Childhood Cancer
Lilah’s resilience is extraordinary — but she shouldn’t have to be this strong.
Children like her deserve more than decades-old cancer treatments designed for adults. They deserve cures made just for them.
Every year, families like the Smoots face a reality where standard treatments can save a life — but at an incredible cost. Harsh side effects, long hospital stays, lasting developmental impacts — this is the current “best option” for many childhood cancers.
But with more research, that can change.
Cures Can’t Wait. Futures Await.
At St. Baldrick’s, we believe every child deserves to grow up — to chase dreams, make memories, and live a life full of possibility.
For Lilah, that means more birthdays. More coffee-and-donut dates. More dancing in the living room. And one day, maybe graduating, falling in love, changing the world in her own way — because kids like Lilah have so much more to give if only they’re given the chance.
Your donation today helps fund the research that makes those futures possible. It powers the breakthroughs that could one day lead to a lasting cure for ATRT — and for every child, no matter what type of cancer they face.
Because when it comes to finding cures, there’s no time to wait.
