Healthy toddler’s seizure turns to malignant brain cancer

Lilah Smoot’s – A single seizure on a day meant for celebration led Lilah Smoot from a carefree toddler life to a diagnosis of aggressive, fast-growing brain cancer. After nine months of treatment—including chemotherapy, stem cell transplants, and proton radiation—she has no

When Katelynn Smoot looks back at the videos of her daughter Lilah from before her diagnosis, the contrast is impossible to ignore. In the footage, Lilah is a happy, smiling toddler—carefree in a way that now feels like another lifetime.

Two months later, that same child would be diagnosed with an aggressive brain tumor.

It started on what should have been one of the family’s happiest days. Smoot and her husband Tyler were in the hospital; Smoot was in labor and about to give birth to their son. Lilah’s younger brother. William. But while her parents were preoccupied with the delivery, Lilah had a seizure at home around 8 a.m. that morning with her grandmother. She was rushed to the ER.

“They did a CT scan and found a mass in her brain,” Smoot told Newsweek. “We didn’t know until the pediatrician came into our hospital room at about 12 p.m. They wanted to wait until they understood what caused the seizure.”

Lilah was transferred to a nearby children’s hospital. Before that move, she was brought to Smoot’s hospital room, where she met her new brother—one of those brief, human moments that can be swallowed by catastrophe.

“When the doctor came in to talk to me, I never imagined it was something wrong with Lilah. She was such a healthy toddler,” Smoot said. “She had absolutely zero symptoms of a brain tumor. Even when they told us there was a mass, the last thing I thought was cancer.”

At the children’s hospital, an MRI confirmed what the family had been dreading: Lilah had an aggressive brain mass that needed to be removed. A week later, she underwent a three-hour surgery. Pathology confirmed it was a malignant tumor.

Then came the diagnosis that narrowed the timeline of everything ahead. A week after surgery. doctors diagnosed Lilah with an atypical teratoid rhabdoid tumor (ATRT). described by Smoot as a rare. highly malignant. fast-growing cancer of the central nervous system. With treatment, Smoot says she was told Lilah had a 50 percent survival rate. Without it, the odds were described as less than one percent.

At that point, there was no realistic choice left but to begin chemotherapy.

What followed was brutal—physically for Lilah, and terrifying for her family. “Five rounds of chemo—three of them high-dose with stem cell transplants—and then six weeks of proton radiation to her tumor site. ” Smoot said. “Throughout treatment, they do scans after each phase. If the tumor is growing back, you don’t move forward. Instead, your child is placed on palliative or hospice care.”.

Smoot credits her community for helping them endure the weight of those months. “Our whole town did their part,” she said. “We had a meal train for three weeks and multiple fundraisers. There were signs in local businesses sharing our story. When you have that many people cheering your baby on, it’s impossible not to feel loved.”.

But the most consistent force, she said, was Lilah herself.

“She is full of light,” Smoot said. “When you’re around her, you can’t help but feel happy. She puts everyone in a good mood.”

The speed of the change still stings when Smoot talks about it. Watching her daughter go from a healthy toddler to a cancer patient in just two months was devastating. And yet, over time, hospital life began to take on routines that made survival possible.

“We had a routine. We knew how to manage Lilah’s symptoms, and the hospital didn’t feel like a dark place anymore. It became home,” Smoot said. “Most days, she acted like a normal toddler—climbing, running, playing with Play-Doh, coloring. She loved dancing and singing.”

In total, Lilah underwent nine months of treatment, finishing in November 2025. In the three scans since, Smoot said there has been no evidence of disease. She will continue to be monitored every three months.

That hope, however, is tempered by reality. “Most children with ATRT relapse within the first two years,” Smoot said. “So even though she’s finished treatment, we’re not out of the woods.”

At every scan, Lilah’s oncologist gives the same instruction: “Go home and make memories.” So they have—turning the aftermath of a diagnosis into something shaped by living rather than waiting.

Smoot said Lilah has visited theme parks. spent time with the University of Pennsylvania football team. and attended Philadelphia Flyers games. She regularly sees family. has met other ATRT survivors. and recently returned from a Make-A-Wish trip to Orlando. where she visited Disney World and Universal Studios.

For Smoot, sharing their story isn’t only about survival. It is also about urgency.

“Childhood cancer isn’t rare—it can happen to anyone,” she said. “It takes just one day for your whole life to turn upside down. So live life to the fullest and let the small things go.”

Lilah Smoot ATRT atypical teratoid rhabdoid tumor brain tumor diagnosis childhood cancer proton radiation stem cell transplant Make-A-Wish Philadelphia Flyers University of Pennsylvania