On October 18, 2024, just 12 days before his 14th birthday, the world lost an incredible boy — Simon Ueanimatang Nabeti, of Glen Ellyn, Illinois. Simon passed away after a brief but brave battle with acute myeloid leukemia (AML).
Born on October 30, 2010, in St. Louis, Missouri, Simon was the beloved son of Ellen (Craft) and Tibwara Nabeti. He was an only child, an 8th grader at Hadley Junior High, and the proud wearer of #96 for the Golden Eagles Football team. He loved his family, his friends, and sports of every kind.
Like many kids, Simon went through phases — from dinosaurs to superheroes, Harry Potter to football. He was always curious, always exploring, always all in.
A Childhood Filled With Laughter and Adventure
Simon’s laughter was contagious. He loved jokes and practical pranks — like the time he convinced his mom to step outside to see something “cool happening with the moon,” only to moon her himself.
He was full of energy and joy, whether he was playing games, hanging out with friends, or finding the next big adventure. He loved traveling and camping with his mom, visiting national parks, becoming a junior ranger, and choosing their summer vacation spots.
Simon was also proud of his Pacific Islander heritage. His dad, Tibwara, is from Kiribati, and Simon loved spending time with his extended Kiribati family in the U.S. He even traveled to Kiribati as a toddler and later spent time in Fiji.
At home, he was a foodie and a music lover. He and his mom would watch YouTube videos of celebrity grilled cheese recipes, then recreate and rate them. In Philadelphia, they ordered cheesesteaks from four different places just to compare.
“He liked all types of music,” Ellen shared. “He went through a Hamilton phase, and I got to take him to see it live.”
The First Diagnosis
In August 2019, after a fun weekend of roller coasters and swimming, Simon woke up in severe back pain. An ER visit revealed a tumor on his spine, and soon after, a diagnosis: acute lymphoblastic lymphoma (ALL).
“The news came in waves,” Ellen remembers. “I was in shock. He had hiked six miles barefoot through Glacier National Park less than a month earlier.”
Those first few days were overwhelming — but one resource stood out.
“When we got the diagnosis, we received a binder from the Children’s Oncology Group with information, resources, and more about St. Baldrick’s,” Ellen said. “It had everything we needed to know about his treatment. It kept me off Google and helped me understand what was happening. It was a treasured gift.”
Finding Light in the Darkness
Even during long hospital stays, Simon stayed true to himself — playful, curious, and kind. The team at Central DuPage Hospital quickly learned his favorite things. There were nerf gun battles with nurses, Harry Potter decorations, and plenty of Uno games.
Community support poured in. When his hair started to fall out, more than a dozen classmates shaved their heads. Friends wrote letters, visited, and carried a computer around school so Simon could still participate in class activities remotely — long before virtual school became the norm.
“The doctors and nurses were amazing,” Ellen said. “And our community was amazing. It was the very best of a terrible situation.”
A Second, Unexpected Battle
Simon completed treatment and rang the bell — celebrating with a Steelers-themed party and a Make-A-Wish trip to the Super Bowl, where he met one of his heroes, NFL player James Conner, a fellow cancer survivor.
But in early 2024, routine bloodwork revealed something alarming. Further tests confirmed that Simon’s first treatment had caused a genetic mutation that led to a secondary cancer: acute myeloid leukemia (AML).
Simon faced this new diagnosis with the same courage he always had. His care team expanded across hospitals and states, collaborating on the best approach. He endured multiple rounds of chemotherapy, two clinical trials, and radiation, all with the hope of reaching a stem cell transplant. His donor — a woman in the Netherlands — was a perfect match.
“He just took everything with the belief that he’d get through it and then live the life he wanted,” Ellen said. “Cancer was just a blip on his childhood that would pass.”
Brave and Kind — Always
Simon’s resilience inspired everyone around him. He never stopped helping others — cheering up younger patients, playing peek-a-boo in the clinic, or giving exhausted parents a moment of rest.
After his passing, the Glen Ellyn Golden Eagles Football program dedicated their season to him. Each player wears a small #96 inside a football above their heart — a reminder to “be brave and be kind,” just like Simon.
A Mother’s Mission
Losing Simon, Ellen says, “completely devastated my life and left a huge hole in so many others.” But she channels her grief into action — hosting blood drives, fundraisers, and speaking at events to raise awareness and research funding for childhood cancer.
“I would scream from the mountain to get people to pay attention,” she said. “We need more funding for pediatric cancer research. No other child should have to go through what Simon did.”
Remembering Simon
Simon will forever be remembered for his laughter, his courage, and his kindness.
Above all, Simon believed he would get through cancer and live the life he imagined. And while his life was far too short, his light continues to shine — in the hearts of everyone who knew him, and in every act of kindness done in his memory.
You can help fund research for kids like Simon. Together, we can give more kids the chance to grow up.
