Jaxon Belliard

Meet Jaxon
Jaxon is seven years old — a bright, charismatic boy from New York with a big personality and an even bigger heart. Born on July 27, 2018, he is at that wonderful age where curiosity and confidence meet. He is expressive, observant, and full of energy, with a warmth that draws people to him instantly. Those who know Jaxon describe him as unforgettable.

He is kind-hearted and playful, a natural athlete who thrives on the basketball court where his hustle and determination have earned him MVP honors in every game he’s played. Off the court, his interests are just as vibrant. Jaxon loves crafting, painting, building with Legos and magnet tiles, swimming, drawing, playing chess, and occasionally video games. He takes piano lessons, attends chess club and Star Wars Jedi Academy, and shows up enthusiastically to every activity that comes his way. He attends school full-time and, even during treatment, wants nothing more than to laugh, play, and live life alongside his friends.

At home, he is a proud big brother who adores his little sister. Their bond is filled with unconditional love — and, as his moms Blenda and Marissa say with a smile, he also enjoys playing the “annoying brother” role from time to time.

Jaxon’s strength is evident in everything he does. Even while navigating treatment, he continues to approach life with joy, resilience, and a determination to participate fully in the world around him.

A Diagnosis That Changed Everything
In June 2024, just one month shy of his sixth birthday, Jaxon’s life, and the lives of his family, changed forever. Over the course of three weeks, subtle but concerning symptoms began to appear: a noticeable head tilt, changes in facial expression and strength, coordination issues, and emotional shifts that felt “off.” Despite multiple visits to urgent care and specialists where symptoms were initially dismissed or unexplained, Jaxon’s moms trusted their instincts. When he began falling repeatedly in a single day, they insisted on immediate action. That decision led them to the hospital and to the scans that would deliver devastating news.

On June 25, 2024, Jaxon was diagnosed with diffuse intrinsic pontine glioma (DIPG).

“It was one of the most devastating days of our lives,” Blenda and Marissa shared. “We went from noticing symptoms to hearing words no parent ever expects to hear.”

At a hospital with limited experience treating DIPG, they were told radiation would be the only treatment option and that Jaxon might have “maybe” a year to live. The shock, confusion, and uncertainty were overwhelming. Life changed instantly.

“There was denial at first — how could this be happening to our sweet, loving boy? It didn’t feel real,” they said. “But alongside the fear came an immediate resolve: we would fight for our child and become his strongest advocates.”

That resolve continues to guide them through every decision, every appointment, and every treatment.

Helping Jaxon Understand
Blenda and Marissa have approached Jaxon’s diagnosis with honesty, care, and age-appropriate language. Jaxon knows there is something in his brain that doctors and his parents are working hard to treat. He understands that medications and hospital visits help him feel better, but he has been protected from the full weight of the diagnosis.

Jaxon calls the tumor his “bubble.”

As he has grown older, he has become more aware of the changes in his body and sometimes expresses frustration about the appointments and treatments that keep him from school activities and time with friends. Still, he celebrates victories in his own way, especially when scans show progress.

After seeing MRI images of his tumor shrink, Jaxon felt proud. Those moments of progress are celebrated by the entire family, offering glimmers of hope and encouragement along the way.

A Determined Fight
Since his diagnosis, Jaxon has undergone extensive treatment. He completed an initial course of radiation in August 2024 and remained stable for more than a year. When progression occurred, he underwent a second round of radiation and responded well. Today, he is considered stable.

Jaxon has participated in two clinical trials and continues on an evolving treatment plan that includes chemotherapy and infusion therapies. His tumor carries an ACVR1 mutation, which has helped guide treatment decisions and ongoing research efforts. His family continues to work closely with his care team, evaluating every possible option as research advances.

A Team Surrounding Him
Jaxon is currently receiving care at Memorial Sloan Kettering Cancer Center, where he is supported by a deeply committed pediatric neuro-oncology team. His physicians, nurses, and specialists work closely with his family to ensure his treatment is thoughtful, coordinated, and centered on his quality of life.

“The staff at MSK has been incredibly informative and supportive,” his moms share. “They know Jaxon well and are always there for us. Sometimes we’re in contact daily. We are deeply involved in every decision and grateful for the unwavering care they’ve shown our son.”

Living Fully, Every Day
Despite the challenges of DIPG, Jaxon continues to live life with enthusiasm and joy. From school and basketball to chess club and Jedi Academy, he embraces every opportunity to learn, play, and connect. He loves being surrounded by family and friends and brings light and laughter wherever he goes.

His family holds tightly to hope — hope for stability, for continued progress, and for a future where children like Jaxon have more options and more time.