Some children have a way of lighting up every room they walk into. Santiago was one of them. He had a big smile and a way of making people feel welcome.
Santiago’s life ended far too soon. But his story — and the courage he showed every step of the way — continues to move us forward. We’re honored to share it here, alongside his family, who keep his memory alive every day.
Santiago loved music, dancing, and just about every sport. But soccer was his passion. At just five years old, he would wake up at 5 a.m. on Saturdays to watch whatever match he could find.
In November 2018, Santiago began experiencing blurry vision. What followed was news no family is ever prepared to hear: Santiago was diagnosed with DIPG (diffuse intrinsic pontine glioma), an aggressive brain tumor.
DIPG grows in the brainstem, the part of the brain that controls essential functions like breathing, swallowing, and movement. Because of where it grows, it cannot be removed with surgery, and treatment options remain very limited. It is one of the most difficult pediatric brain tumors to treat — and one of the clearest reasons research matters so much.
Treatment took a toll on Santiago’s strength, but never on his determination.
When his school held its annual fun run, Santiago was set on taking part. In the days leading up to it, he practiced walking with his little sister, Arianna, holding his hand.
On race day, Santiago stood up from his wheelchair. Surrounded by cheering classmates and teachers, he walked all the way around the track.
It’s a moment that captures who Santiago was: brave, determined, and surrounded by a community that loved him. His friends rallied around him, too — proudly wearing #SantiagoStrong.
Santiago passed away on January 17, 2020, at nine years old — after just 14 months of treatment.
Today, his family continues to celebrate his birthday, tell his stories, and say his name. Through them, Santiago’s joy and courage continue to reach people who never had the chance to meet him.
Children like Santiago are at the heart of everything we do at the Pediatric Brain Tumor Foundation. Their lives and legacies fuel our determination to advance research toward safer, more effective treatments and cures — and a future where no family has to lose a child to a brain tumor.
That’s why PBTF is changing how pediatric brain tumor research moves forward. Starting with our 2026–27 research funding call, every project we fund must make its data research-ready, reusable, and available to the wider scientific community — so discoveries can be shared, built upon, and turned into answers for children faster.
Santiago’s story reminds us how much is at stake — and how much hope is possible when a community comes together.
You don’t have to walk this road alone. If your family is facing a brain tumor diagnosis, our Family Support team is here to listen and help: [email protected].
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