Do you remember the lullaby “You Are My Sunshine”?
For Lilah’s mom, Katelynn, those lyrics now carry a weight she never imagined.
“Every night before bed, ever since Lilah was born,” she says, “my husband or I would sing to her. We sang ‘you are my sunshine,’ but replaced ‘sunshine’ with ‘Lilah.’ Now when we sing, ‘Please don’t take my Lilah away,’ it feels more like a prayer. I feel it deep in my soul. I’m begging—please don’t take her away.”
Before you hear the rest of her story, you should know who Lilah is.
When you meet two-year-old Lilah, you immediately notice her easy smile, her bold curiosity, and the way she struts—yes, struts—into any room like she already owns it. She loves donuts and coffee (both kinds). She powers through appointments with a slice of pizza in hand. She greets each morning as if the world is hers to conquer. And she has a way of lighting up any space she enters, even on the toughest days—especially on the toughest days. Sweet, silly, and fiercely mighty, Lilah is joy in motion.
Her family’s world changed on February 24, 2025—the same day her brother, William, was born. While Lilah was home with her grandma, she had a seizure and was rushed to the hospital. Scans revealed a mass in her brain. What should have been a day of celebration became the day they learned their 18-month-old daughter had a brain tumor.
A week later, on March 3, Lilah underwent brain surgery. The procedure was successful, and surgeons were able to remove the entire tumor. Soon after, tests confirmed a diagnosis that would reshape her family’s life: ATRT (atypical teratoid rhabdoid tumor), an aggressive pediatric brain cancer.
Treatment began immediately. Her plan included five rounds of chemotherapy—two induction rounds followed by three rounds of high-dose chemo with stem cell rescue—and six weeks of proton radiation. It was an intense frontline protocol for any patient, let alone a toddler.
But Lilah faced it with a strength far beyond her years.
Her first round of chemo kept her inpatient for 20 days as she battled mucositis and norovirus. Yet the moment she felt well enough, she danced—every single day—turning hospital hallways into her stage.
By June, she had completed induction therapy and her first high-dose round. Incredibly, she was eating and drinking on her own and was even able to say goodbye to her NG tube. Her care team marveled at how well she was tolerating treatment. Her parents expressed deep gratitude for the support that helped them navigate months away from work and weeks spent in the hospital.
In August, Lilah celebrated her second birthday while inpatient—complete with cake, laughter, and a room full of people who adored her. Soon after, she finished her final round of chemotherapy.
Next came proton radiation in Philadelphia. The logistics were daunting—weeks away from home, daily sedation for a two-year-old, and long days in an unfamiliar city. But Lilah approached it with her signature boldness. Even when the proton machine faced technical delays on her first day, she handled the long wait with remarkable patience. And the moment she woke up from anesthesia? She chugged her favorite treat: Starbucks protein coffee. (According to her family, it’s one of the only protein-rich things she’ll willingly consume… and she refuses to share.)
In mid-December, she underwent scans. The results brought hope: there is no evidence of disease. Even more encouraging, Lilah’s spine MRI is completely clear.
Through every challenge, Lilah has shown the world exactly who she is: strong, sassy, joyful, and unstoppable.
Her family has moved three times for treatment and remained out of work to support her care. Through every transition, their priority has never wavered—Lilah’s comfort, her joy, and making memories.
“In the quiet moments,” Katelynn shares, “when I find myself trying to memorize every little detail about her, it hits me… ‘Please God,’ I think, ‘let me see the beautiful woman I know she will become. Let me see her grow into the person she’s meant to be.’”
Because while Lilah may be small, she is mighty—and she is showing all of us what courage looks like.
Every child deserves the chance to dream big, just like Lilah. Your support fuels the research that turns hope into reality for kids fighting cancer.
