The Sparkle Nora Left Behind: A Family’s Fight to Change the Future of DIPG

Jani Bunn wants everyone to know: “Brain cancer is NOT RARE; it’s actually the number one cause of death for kids with cancer. Our daughter, Nora, passed away exactly one year after she was diagnosed with an aggressive brain tumor that is under-researched, under-funded, and spread like glitter through her brain, which made it impossible to remove. We lost her to something that desperately needs more attention, more funding, and more hope.”

A Bright Light Dimmed Too Soon

Nora Bunn was just six years old when everything changed, suddenly and irreversibly, for her and her family. A precocious kindergartner from St. Louis with a deep love for animals, Nora was diagnosed with a disease that completely upended the energetic, wonder-filled life she embraced each day. On March 6, 2025, exactly one year after her diagnosis, she passed away at age seven from DIPG (diffuse intrinsic pontine glioma), an aggressive pediatric brain tumor with no cure. But Nora’s story isn’t defined by her death. It’s defined by her boundless energy, her love of learning, her fierce spirit of advocacy, and the sparkle she somehow held onto – even in the hardest moments.

“She loved hard, and she fought hard,” says her mom, Jani. “That same spirit is what we saw this last year. She taught us so much.”

From the beginning, Nora was the kind of kid who made an impression. A high-achieving kindergartner, she filled her weeks with taekwondo, gymnastics, tap, jazz, ballet, and soccer. She adored animals, especially the family’s “crabby old fat cat” Buddy Kat, their golden doodle Kramer and a rotating school of fish that she and her sister Reese, 9, named together. “If Nora were sitting here,” Jani laughs, “she would insist that if we’re talking about our family, the fish have to be included.”

Signs, Setbacks, and a Shattering Diagnosis

In the fall of 2023, Nora began complaining about light sensitivity and persistent headaches. Despite reassurances from doctors, Jani and her husband Brent knew something wasn’t right. “As parents, you initially think it’s normal kid stuff – they fall, you give them an ice pack, then on to the next thing. But when she couldn’t stand up after getting off a swing, we knew it was something more,” Jani remembers.

The diagnosis came after a series of misdiagnoses and a false-negative CT scan. But when Nora underwent an hour-long MRI scan that wound up taking three hours, “We said to each other, this isn’t good,” Jani recalls. Following the MRI, “They told us to meet in her room,” Brent says. “The neurologist walked in and he was blunt: ‘It’s bad. This is your worst nightmare.’” Nora had DIPG, and the prognosis was devastating.

“You Google it, and there’s nothing. Just palliative care,” says Jani. “I don’t think there’s anything else I’ve ever Googled where the result was zero hope. That means you have to find your own hope because it’s not really being offered anywhere else.”

Nora underwent six weeks of radiation and responded incredibly well – walking, running, even doing pushups. “It was crazy to see the immediate turnaround, and that, I think, gave us false hope,” says Brent. During that time, Nora also gave an impromptu talk to her kindergarten class because she wanted her classmates to understand. It stunned everyone – her teachers, her parents, and her medical team. “She was her own best advocate,” says Jani. “She was inquisitive, and she wanted to share what she knew.”

When Parents Have to Be the “Experts”

From radiation to entering a Stanford University Medical Center clinical trial to investigating several other trials, Jani and Brent became Nora’s research team, advocates, and medical coordinators. They worked tirelessly to give her every possible chance. They connected with specialists in the U.S. and abroad, sifted through trial options, and navigated impossible decisions, all while trying to maintain some semblance of a normal family life.

“You think a majority of doctors will share a similar opinion, that you’ll be guided,” Brent says. “But it wasn’t like that. We were the ones doing the interviews, making the decisions. It shouldn’t be this hard in 2025.”

Through it all, Nora’s light didn’t dim. After her first CAR-T infusion (an immunotherapy that uses a patient’s own lab-modified T-cells to attack cancer cells), she returned home to a neighborhood filled with signs, cheers, and friends. “It made her feel like she was famous – which, of course, she loved,” Jani recalls.

A Dimming Body but a Sparkling Spirit

Though the CAR-T treatment initially showed promise, Nora’s condition declined rapidly a week following her second infusion. A cyst growing in her tumor was causing severe complications, and only three doctors in the country could perform the procedure to drain it. Thanks to community support and relentless advocacy, she made it to Stanford University Medical Center for the surgery – but the cancer had already begun to spread, and a third, “Hail Mary” CAR-T treatment didn’t work.

Nora spent her final months surrounded by love, determination, and incredible support, from a Moana 2 pre-screening to a personalized video from The Rock to the publishing of her book Sparkle of Love, which has sold over 1000 copies and is in children’s hospitals across the U.S., Canada, and in the UK. Nora even fist-bumped the entire St. Louis Blues team in February, and her family credited Nora with sparking their subsequent winning streak.

“As she declined, she lost everything except her cognitive function,” says Jani. “Even on her last day, she was communicating about reading and learning about animals.”

Where Nora’s Light Leads Next

Nora’s impact has sparked an effort to raise awareness and accelerate research for better treatments. The Nora’s Sparkle of Love Project, a foundation launched by her parents, will focus on funding research into pediatric brain tumors – especially DIPG – and supporting families navigating similar difficult diagnoses. “We’re on this journey for the rest of our lives,” Brent says. “And we’re going to try to make it better for the families who come behind us.”

They’ve donated Nora’s brain to Stanford University Medical Center to support DIPG research. After a biotech company saw some of Nora’s inspiring videos, they collaborated with a large university medical center and are now working on testing their current cancer fighting vaccines against DIPG cell lines. It is this type of collaboration that is essential to changing the future of DIPG.

A local St. Louis spice company launched “Nora’s Unicorn Sparkle Spice.” And her book continues to be shared around the world. Jani and Brent are now turning to Nora’s next book, a story Nora dreamed up about “a donut named Harold who broke his leg playing soccer.” They’re determined to bring it to life.

“We called Nora our honey badger,” Brent says. “She was tough, fierce like a badger. You could back her into a corner, and she’d come out stronger.”

Though she’s gone, Nora’s voice echoes in her family’s efforts to bring more light, more urgency, and more hope to kids like her.