“This Child Cannot Be Stopped” – Lilah’s Unbreakable Spirit in the Face of ATRT

At just 20 months old, Lilah Smoot is proving what it means to be resilient.

Bright, joyful, and full of energy, Lilah’s parents had no reason to suspect anything was wrong. “She has always been such a happy girl,” says her mom, Katelynn. “We had absolutely no idea there was ever anything wrong.”

A Joyous Time Interrupted by Trauma

But on February 24, 2025 – the day Katelynn went into labor with her second child – Lilah had a seizure while staying with family. She was rushed to the emergency room, and a CT scan revealed a mass in her brain. One week later, Lilah underwent brain surgery. Doctors at Brenner Children’s Hospital in Winston Salem successfully removed the entire tumor, and the very next morning, Lilah was up and playing like her usual self. She was discharged two days later.

Then came the diagnosis: Atypical Teratoid Rhabdoid Tumor, or ATRT.

ATRT is an extremely rare and aggressive form of brain cancer, primarily affecting children under the age of 3. Fewer than 100 children in the United States are diagnosed each year. These tumors grow quickly and can affect the brain, spine, and other parts of the central nervous system.

For Katelynn and her husband, Tyler, this diagnosis came at a time when life was already changing fast – bringing home a newborn, navigating hospital stays, and now, preparing for a long treatment journey ahead.

“It has been challenging navigating this diagnosis while also trying to take care of a newborn,” Katelynn shares. “Lilah’s brain surgery was scheduled just a week after I gave birth to our son, William, so Tyler’s parents rented an Airbnb close to the hospital and watched the baby for me while I stayed with Lilah.”

A Hospital Becomes Home Base

Now, as Lilah begins chemotherapy, she’s following an aggressive treatment protocol known as ACNS0333. It includes two rounds of standard chemotherapy, followed by three rounds of higher-dose chemotherapy combined with stem cell rescue. In this process, Lilah’s own blood-forming stem cells – collected and stored before treatment – are returned to her body after high-dose chemo to help her recover, which will then allow for additional intensive chemotherapy. This regimen has been shown to improve the survival rate for ATRT patients from just 12 months after diagnosis to 40% after the five-year mark.

“That 40% is what we hang onto,” says Katelynn.

Lilah’s treatment will continue for the next six to eight months, and during this time, the Smoot family has made Duke Children’s Hospital in Durham their home base. Because Lilah is receiving inpatient chemotherapy, which involves 21-day hospital stays followed by short breaks at home, the family has settled into a new routine. Katelynn and William stay at the nearby Ronald McDonald House, while Tyler stays with Lilah in her hospital room and works remotely. During the day, the entire family spends time at the hospital with Lilah.

“We decided to cancel our apartment lease since we weren’t living there anyway,” Katelynn shares. “It didn’t make sense to keep paying rent on an empty place, so we’ve also been working to move out of our apartment and into Tyler’s parents’ house during this first round of treatment. It’s been a lot.”

Though their journey is intense, the Smoots are not walking it alone.

T-Shirts, Car Shows, and Love from Every Corner 

“We are so incredibly blessed with all the support we’ve been receiving,” Katelynn says. “Tyler’s family is local in Madison, North Carolina – just over an hour from the hospital – and his mom and sister have been helping us so much. Our church, Comer’s Chapel Baptist Church, even organized a meal train during the two weeks we were home between Lilah’s surgery and the start of her chemo. Honestly, the love and support from family and community has completely blown us away.”

That support has come from every direction. A local business featured a t-shirt fundraiser, the family’s church put on a car show, and GoFundMe flyers are posted in shop windows all over Madison. Even from across the country, support continues to roll in. The gym Katelynn attended in Phoenix, where she’s originally from, is hosting a charity event for Lilah, and her family in Arizona is preparing to move east for the summer to lend a hand however they can.

“There are so many people, businesses, and churches that have done something for us I couldn’t possibly name them all,” she says. “We are very blessed. Lilah is very loved.”

Katelynn has also created a Facebook page, Stand with Lilah, to share updates, raise awareness for ATRT and childhood cancer, and offer a place of encouragement for other families who may one day walk this road.

“We’re still so new to this community, but as time goes on, I hope to become someone other parents can turn to,” Katelynn says. “And I hope one day we’ll eventually be in a position to donate to pediatric cancer foundations to help with research.”

Dancing Through the Storm

Even in the midst of chemotherapy, Lilah’s spirit shines as brightly as ever. She still loves to dance, play, and climb – whether it’s the rooftop playground at Brenner Children’s Hospital or every corner of her hospital room. On tougher days, she’s content to just snuggle with her parents. She has received two blood transfusions during this first round, experienced fevers and mucositis, but still Lilah finds reasons to smile and laugh.

“This child cannot be stopped,” Katelynn says with a smile. “You can’t help but love her. And you can’t be sad when you’re with her.”

The family knows the road ahead is uncertain. Lilah will need more rounds of chemotherapy and eventually radiation, depending on how her body responds. There’s still concern about possible regrowth, and the full picture won’t be clear until later MRIs.

But despite everything, the Smoots remain grounded in hope and faith.

Hope Is Essential, Help Is a Gift 

“Without hope, we have nothing,” says Katelynn. “We lean on our faith in moments of uncertainty. I truly believe everything happens for a reason, and I believe Lilah was put on this earth to bring people together. She has a certain spark about her that everyone, even strangers, are drawn to.”

For other parents just beginning a journey like this, Katelynn offers simple yet powerful advice: “Lean on your community, and don’t turn away help when it’s offered. Ask for support when you need it and take advantage of the resources available – there are so many amazing programs out there. Seek out support groups and surround yourself with people you can lean on. Try not to stress about the future; just take things one day at a time. Your child and your family are your number one priority. Everything else can wait.”